Epilepsy Does Not Define Me

By Zunzika T. Okpo 

My brother has always troublesome. Maybe it’s because he is my younger brother and that’s what they are meant for. He was not only troublesome, he was also a little bit of a daredevil. Perhaps this is why we may have missed his first seizure.

 Brother and Sister

Brother and Sister

We always played together when we were kids. Our mother would say ‘put your shoes on if you want to go outside and play’. What would we do? We would put our shoes on, leave them at the balcony and jump to the ground floor. It was during one of these events that he fell after jumping. He landed smoothly, as always and then shook a little bit and injured himself badly. Not wanting to get into trouble, I did not tell my mother what I saw. Instead, I just said he fell. He was treated for the wounds and that was the end of it - or so we thought. 

A couple of years later, I was in Grade 7 and he was in Grade 5. I came back from school to find my brother with a swollen lip. A cousin of ours was telling the story of what had happened. He said my brothers arms were in the air, he stiffened, fell to the floor hard, and then started shaking uncontrollably. Not only was his lower lip cut and swollen, he also had other visible scars on his face, arms and legs. The boys made fun of each other and I joined in too as at that moment he had a swollen lip and somehow that was funny. He had a series of seizures and my mother did some research. She did not find anything conclusive so she sent him to my grandmother’s in the village. He was told not to eat chicken and if he must, it was to be cooked in green weird looking herbs. After about a school term in the village, he came back home. A friend of my mom’s also echoed my grandmother’s concerns about chicken and so my brother stopped eating chicken. The seizures did not stop. After a while, my mother, not particularly devout, started going to church in hopes that her son would be healed through prayers. The seizures did not stop. We were all quite scared, I was afraid to be alone with him because I did not know what to do in case he had a seizure. My mother had coached us; get a spoon, wrap cotton wool around it and put it in his mouth so he doesn’t bite himself. She also told us to turn him to the side so he doesn’t choke.

One time, my mother had travelled. It was me, my sister, brother and my cousin in the house. I remember the actual date - May 10th 2001. It was my older brother’s birthday. Also, this was the first time I’d seen him have a seizure right in front of me. He had the first one around 7pm. I held his legs, we couldn’t get the spoon and cotton wool on time so my cousin held his mouth. He finished seizing and we gave him some water and continued watching TV. An hour later, he had another seizure. At this point, my older sister was there so I just stood aside and watched. He had another one thirty minutes later, and then 15 and then the time kept getting shorter and shorter. His medication had finished and it was like the seizures were making up for lost time. Before he was taken to the hospital, I counted 9 seizures. I remember this day so well because I thought this was the last time I’d see my baby brother. He was admitted and given medication and the next morning my baby brother was back home.

Fast forward to early 2003, I witnessed a slight seizure. I say slight because one minute we were talking and then his head, only his head, started turning to one side. I thought he was joking so I asked him to stop, I told him it was not funny. He clearly had no control over it so I rushed to call my mother. When he eventually stopped, he said he could hear everything that was happening, he just could not answer me. 

When we got to university, I got called a few times because my brother was ‘shaking uncontrollably’. One very scary occasion happened early in the morning. He went to pee and his roommate heard a loud noise. He called out for my brother but there was no answer. He then rushed to my room to tell me what had happened. I went over to their room and sat by the bathroom door. I called out to him and there was no answer. The roommate went to get someone to break the door. I refused to leave and of course, I feared the worst. I prayed and prayed. I kept calling after what seemed like hours, he answered me. I asked him to stand up and open the door. Slowly I heard the key turn and he fell into my arms. I helped him to his bed, gave him some water and he threw up. That was my process. After throwing up, he was then able to take medication and keep it down. I put him to sleep and went to the bathroom. It was horrifying. There was blood everywhere. I cleaned it up, and went to sit by my brother. I watched movies as he slept. When he woke up, he looked at me and asked why I looked so worried. He was more concerned about me than about himself. 

The most admirable thing about my brother is he adheres to his medication. He has been through a lot. In 2015, he had what I’d term the worst seizure ever. He was burned but the strength he displayed leaves me in awe. I was worried sick and crying but he put on a brave face. I hope he knows that he has a strong support system. We love him and even though we worry, he reassures us and that’s supposed to be the other way round. He lives as normal a life as possible, he does not let the epilepsy control his life, he controls it. He knows his triggers and when he feels a certain way, he lies down so that if he has a seizure, he is safe. I think that is admirable.