Epilepsy awareness · Zimbabwe

Epilepsy is a condition, not a curse.

It is a neurological condition that affects people in every family and every community. With the right knowledge, medicine and support, most people live full lives. This is my story, and what I wish more people knew.

Calm A seizure Recovery
1.34%Estimated share of people in Zimbabwe living with epilepsy: between 180,000 and 500,000 people.
~85%Estimated share of people with epilepsy in Zimbabwe who do not get adequate treatment.
~70%Share of people with epilepsy who can become seizure-free with the right medication.

Zimbabwe figures: International League Against Epilepsy, Zimbabwe chapter spotlight. Seizure-freedom figure: Epilepsy Foundation Australia.

My story

Living with epilepsy

Sickness became my identity, isolation became my personality.

Early years

I started having seizures at a very young age. Epilepsy got in the way of both my education and my private life, and it came at a time when Zimbabwe was going through hyperinflation and deep poverty. Seeing a doctor was not an option.

The seizures changed over the years. I went from several mild seizures a day, to fewer but more painful ones, roughly weekly, and then to about one a month.

It shaped who I became. I turned highly antisocial, self-conscious and, for a time, an atheist, and I leaned on comedy to cope. I felt the world was always looking at me and judging me. I got used to it, but wherever I went, I felt eyes on me.

Then the fear set in. Going to sleep meant the possibility of a seizure, or of dying during one, and after it came the long recovery. Sickness became my identity and isolation became my personality. I had headaches so often that sometimes I had one without noticing it. Friendships felt annoying and relationships felt like a burden. I became an indoor person who barely knew the neighbours.

The hardest part was not the pain, or even the fear of it. It was the lost memories. Even now, in my twenties, I barely remember my childhood or my high school days. My classmates, my teachers, my crushes, my enemies, my own actions, most of it is gone.

I am still in WhatsApp groups from high school, and some of the friends in them I barely recognise, or have to struggle to. The names, the personalities and the events are all lost. So when they talk about the things we used to do, I keep quiet.

By God's grace, I kept the maths, the science, the chemistry and the history. I owe that to two friends who got me interested in them in the first place. Kelvin Tichana, a genius with great scientific knowledge and curiosity even back then, and Bradley Mavudzi, who got me interested in the arts. I did not have the maturity or the social skills to tell them at the time, but both of them reshaped my life. Today, the things that define me are my love for science, tech and the arts, including history, music and geography.

Around then, an invasive thought took hold, one I have shared with only one person. It said: you will die alone, by the age of 25 you will not exist, and no one will remember you. It grew louder as I left high school.

I finished high school with 13 points: an A in maths, an A in physics and a C in chemistry, despite everything I had to fight against, and only by God's will. But my main question was what the point of college was if failure in life was inevitable. I felt my story was written before I was born, and that its ending was 25. That thought had burdened me for years.

The gap years

I delayed college by two years. In that time I got my first taste of life, working as a tutor in maths and physics and occasionally literature. I was still highly antisocial, but I made a few friends here and there. One I regard as a brother because of his spiritual perseverance: Owen Mupfunya, a lively young man I met at church.

Owen helped me revive my faith, which had been fading day by day after I visited so many churches with almost no results. His circumstances were far from perfect, yet he had perfect faith and a clear path to success ahead of him.

The gap years were also when I finally saw a doctor and got a full diagnosis. I was skeptical, but I followed the instructions, and for the first time since childhood I had a month with no seizures. I had finally done it. Science had done something God had failed to do. That pulled me back into my atheistic worldview, or maybe better defined, an agnostic one. But I could not undo years of programming in my head that told me I was cursed and doomed to fail at everything I did.

College

Eventually my finances and my health were stable enough for me to go to college. I was ecstatic. I could finally do something with my life and make an impact on the world.

My first days there looked like my days in high school. I barely wanted to talk, I saw most social things as a burden, and I wanted to focus on my studies and nothing else. My health had ups and downs. One was a rise in anorexic behaviour that I had developed, without knowing it, at a young age. I soon noticed I was underweight compared to my peers, and countering it was hard, especially with dwindling finances and my reluctance to drain my mother, Stella Chiriseri. She was the only one who could pay for my college, on a salary far from enough for it, so she worked three jobs: teaching, group private lessons and one-on-one private lessons. She is my rock and the example I hope to follow.

Even after I was doing better, times of high stress brought the symptoms back. One was a strange feeling I had no name for from a young age. Because it felt like déjà vu, I associated it with "That's So Raven". For three to five seconds I would not understand anything I heard, saw or thought. Before I took medication, it was a sign that I would have a major seizure in the next day or two, and it would ruin my day. It was my worst nightmare, my kryptonite. After I started medication, I knew my evening dose would solve it, but in the most extreme cases it still led to a major seizure, especially if I was stressed or tired, or forgot to take my medication before bed.

I had three seizures in my four years at college. The first was in my first year. A friend I shared a room with never treated me the same after that day, and that made me feel terrible.

I then got an attachment position in a different city and, for the first time, worked in a stressful environment. It pushed me to the brink of my ability and made me realise I still had to work for things the average person found came naturally. The medication drained my energy, and the risk of seizures if I skipped it kept me sick or tired much of the time, but I soldiered on. I worked for TigerWeb, and I still do to this day. My boss, Enoch Mutemeri, inspired me to work harder and to always think about the future and the implications of the present. His criticism of every solution I brought pushed me to prove myself. I did not even believe I was good enough, but I was determined to prove that I was.

During this time I had another seizure, at home. I fainted and fell on a bottle of oil, which spilled all over the floor. I woke up not in my right mind, with no idea what had happened, and in a poor attempt to clean up I used my landlord's tools and ruined them. When I came back to myself I told her what had happened, and she called my mother. I could hear her on the phone, complaining, and one sentence pierced me: "What if he were to die here, you didn't tell us?"

The third seizure was one of the most detrimental. I prided myself on my love for programming, and my capstone project was something I wanted to use to prove to myself that I was worthy. All semester I used it as an excuse to learn new technology, and it worked. I wrote and rewrote the code many times, and built and rebuilt the hardware. As the presentations approached, the stress grew. On the day of my presentation, a mix of sleep deprivation, energy drinks and anxiety drove me into a seizure with the project in my hand. The work I had done all year was gone, crashed by the same hand that made it. It was a terrible day, and it felt like proof that I would always be defined by my sickness.

Where I am now

But I refused to give in. Epilepsy is something I have, not something I am. I am the MadScientist, a man of laughter, empathy, strength, intelligence, art and perseverance.

Despite all these obstacles, I reached 26 years old, lived independently in another city, earned a 2.1 degree in electronic engineering, became head developer at a company with hundreds of customers, and co-founded Hungwaru Smart Technology.

I have taken my greatest weakness and made it my greatest strength. A very good friend of mine once put it like this:

Epilepsy means you have a lot of electricity in your brain, and it is a weakness. Being an electronic engineer means you have a lot of electricity in your brain, and it is a strength.

This page has one purpose: to say I did it, and so can you. Your disability is not your inability. It is an obstacle that will teach you discipline, resilience, strength and faith.

Myths & facts

What people get wrong

Fear and silence hurt people with epilepsy as much as the seizures do. Here is what the science says.

MythEpilepsy is caused by a curse, witchcraft or spirits.

FactEpilepsy is a neurological condition. It comes from unusual electrical activity in the brain, and it can be treated with medicine. Harmful beliefs like this delay treatment.

MythYou can catch epilepsy from someone.

FactEpilepsy is not contagious. Helping someone during a seizure is safe, and it is what they need.

MythEpilepsy is a mental illness.

FactIt is a neurological condition. Some people with epilepsy may also face conditions like depression, which deserve care too.

MythEvery seizure means falling down and shaking.

FactThere are more than 40 types of seizure. Some look like a few seconds of staring, confusion or brief twitching.

MythPut something in the person's mouth so they don't swallow their tongue.

FactA person cannot swallow their tongue. Objects in the mouth can break teeth and hurt them.

MythEpilepsy is a life sentence.

FactMany people control their seizures with medication and go on to study, work, marry and raise families. Some childhood epilepsies are outgrown.

Source: Epilepsy Foundation Australia, myths and misconceptions.

First aid

If someone has a seizure near you

You do not need medical training. Stay calm, keep them safe and time it.

Do

  1. Stay with the person and keep others calm.
  2. Clear away anything nearby that could hurt them.
  3. Ease them to the ground if they are falling, and put something soft, like a folded jacket, under their head.
  4. Take off their glasses and loosen anything tight around the neck.
  5. Turn them gently onto their side, mouth pointing down.
  6. Time the seizure.
  7. When it ends, stay until they are fully alert, then reassure them and explain what happened.

Do not

  • Hold them down or try to stop their movements.
  • Put anything in their mouth.
  • Give food, water or medicine until they are fully awake.
  • Give rescue breaths during the seizure.

Get emergency help if

  • The seizure lasts longer than 5 minutes.
  • Another seizure follows soon after.
  • They have trouble breathing or waking up.
  • They are injured, or it happens in water.
  • It is their first ever seizure.
  • They are pregnant, or have diabetes.

In Zimbabwe, 999 is the national emergency number, but ambulance availability outside big towns is limited. Save the number of a private ambulance service near you before you need it.

Source: US Centers for Disease Control and Prevention, first aid for seizures. Emergency number: Trek Medics Global EMS Database.

Get help

Support in Zimbabwe

If you or someone you love lives with epilepsy, you are not alone. These organisations work on epilepsy in Zimbabwe.

Epilepsy Support Foundation Zimbabwe

Advocacy, awareness and support for people with epilepsy. Listed by the International Bureau for Epilepsy at 43 St David Road, Hatfield, Harare.

Visit their Facebook page →

Epilepsy Resource Centre Zimbabwe

Resources and training material for health and social service workers, including a manual on epilepsy.

Visit ERCZ →

Zimbabwe League Against Epilepsy

Zimbabwe's chapter of the International League Against Epilepsy, working on research, training and treatment.

Visit their Facebook page →

Contact details change. Check an organisation's page before you visit. If you have had a seizure, see a doctor or clinic. Do not stop taking prescribed medication without medical advice. This page shares awareness and personal experience. It is not medical advice.