Speak Up, Stand Strong

When I was 12, a cricket ball hurtled towards me and changed my life forever. Due to the era I grew up in, boys were expected to demonstrate their worth by showing how tough they were. This meant not wearing a helmet in a game of cricket. So, when the hard-leather corked ball crashed against my head, I was completely knocked off my feet, and I crashed to the ground. A few days later, I had my first seizure. While epilepsy is genetic on my father’s side, I was told the head trauma triggered my condition. The ball whizzing into my head disrupted normal brain activity and resulted in long-term abnormal brain activity. This meant seizures occurred often in both my adolescent and young adult years. 

Experiencing seizures is only part of my story, though. When certain cards are dealt in life, how we play the game is up to us. I was careless in how I navigated the path because I was ashamed of my condition. I neglected my health over the years, and it culminated in various seizures, which resulted in three chipped teeth, a cracked skull, a dislocated shoulder, and my tongue being bitten several times. 

A lack of sleep precipitated most of these seizures, but I was also unable to manage my alcohol intake responsibly. Growing up in an all-boys school came with pressures and labels we were meant to own. It was the beginning of my journey to manhood, where I was supposed to be able to drink and keep up with my friends and deal with any consequences later. For me, the consequences were at least two seizures a year, some of which nearly claimed my life. This continued into university and my early work life until I moved away from a big circle in Johannesburg to being more isolated in Cape Town. It then dawned upon me that, if anything was to happen to me in that city, I was alone, and no one would know that I had fallen to the ground until days later. 

I had had enough. I took a stand and started taking better care of myself. I cut out alcohol. I started exercising and playing sports more consistently. I was relentless in making sure I took my medication, night and day. It has now been over nine years since my last seizure, which is the longest I have been seizure-free. I am playing the cards that were dealt to me in a manner I can be proud of. I am now enjoying my life. 

There have been several obstacles and challenges in my efforts towards embracing my condition. The first is around the stigma of being a man. From an early age, I had to deal with peer pressure and drinking alcohol to fit in. This was first at school and then later on with extended family as well. To compensate for my condition, I drank even more, to show everyone I could not only handle my liquor but that I was also not a weak man. 

There is also the medication I have been on since I was a child. While it has helped to keep me alive, it has come with a range of side effects, including my weight fluctuating, my hair thinning from time to time, and anxiety and depression. Finally, there is the greatest threat to my condition: trying to get enough sleep. This has to be achieved even though I am part of a high-performing team in a demanding job. It is a constant battle for me to get a minimum of six hours of sleep, so that I do not have a seizure. It comes with a lot of pressure, but I continue to try my best daily. I have a supportive team and manager at work.

Despite these challenges, I have decided to take back my power by controlling what I can. That means living a healthier lifestyle, which in turn has led to me being on a lower dosage of medication. It is not always easy, and there are days I worry I will have another seizure or I could fall once more. If I do, I know I have the strength to get back and go again. 

I am thankful to everyone who has supported me on my journey towards being comfortable in my skin. I am grateful that I don't need to drink alcohol to fit in. I am not scared to talk about living with an invisible disability that takes countless lives every year. These are things I am truly grateful for. I also want to pay tribute to my company, which created a workplace for me that allows me to feel like I truly belong. Even if I make a mistake, it’s not because I don’t care. It’s because, like everyone else, I’m learning as we go.

Finally, to those who suffer from epilepsy or other medical conditions, let’s change the narrative together. We are not victims. We are warriors who move forward despite what arrows have been fired towards us. Let’s be brave. Let’s show the world and ourselves what we are capable of. I want people who are fighting battles no one else is aware of, not to be scared to speak up. Or to reach out to those around you. Life is better when you share your challenges, pain, and trauma. Tell your story. You never know who’s listening and who needs to hear it most.