I waited for someone to come to my school and talk about epilepsy, like they did for TB or HIV. That person never came. So I became her.

I have always believed we must acknowledge our differences - not to divide us, but to understand and uplift one another. My name is Nina Mago, and this is my story, raw and real, about living with epilepsy, finding purpose, and creating change through the Purple Bench Initiative.

Nina Mago

I was in secondary school, senior four, when I first saw epilepsy up close. It was during a literature class. Suddenly, there was chaos, tables crashing, chairs scraping, and kids bolting for the door. A girl named Sheila had fallen, shaking uncontrollably. Everyone ran, including me. But as I fled, a heavy feeling tugged at my heart, like I was abandoning someone who needed help. I didn’t know why it hit me so hard. The same day, I told my dad about Sheila. I described how she fell off her seat, shook, and he stopped mid-step, turned to me, and asked, “When she fell, what did you do?” I admitted, “I ran, like the rest of the kids.” His glassy eyes caught me off guard, but he just kept walking. We didn’t talk much more about it, but his question lingered: What did you do?

Years later, I learned why that moment stuck with me. At university, I finally pieced together the puzzle of my own life. Growing up, I’d had countless doctor visits, often with my mom. The doctors asked her, “How’s she sleeping? Is she doing this? How’s she faring?” I never spoke to them myself, so I didn’t question it. I was just a child. But in university, I went to a doctor alone for the first time and learned I’d been living with epilepsy since I was three. It was a shock, but it also made sense of the blank spaces in my life - moments I couldn’t account for.

The Purple Bench Team

In primary school in Uganda, I was at boarding school, and those blank spaces were stark. I’d wake up on the classroom floor, alone, kids playing in the distance. Once, a classmate asked, “Why did you scream in class?” I snapped back, “I didn’t scream!” But deep down, I knew something was off. I’d have these moments - déjà vu, like predicting a teacher’s movements in math class, step by step, only to black out and wake up alone again, many hours later. I’d trudge back to the dorm, still in my uniform, while the dorm mother scolded, “Mago, where have you been? Everyone’s showered and dressed!” Exhausted, I’d just follow her orders - shower, dress, eat. No explanations.

My mom later told me she’d informed the school about my seizures, but it didn’t seem to matter. Teachers and children  would vanish when an attack hit, leaving me on the floor. Maybe the lesson was almost over, or maybe they just didn’t know what to do. There were always maybes. The stigma around epilepsy was so thick, it felt like no one dared stay.

I learned about the “aura”. The strange sensations before a seizure. For me, it was déjà vu or my ears zoning in and out, like my left ear would sharpen, then fade, and my right would take over. Sometimes, I’d sense it coming and run to my parents or brother, who knew how to help me sleep it off. But as I grew older and ventured out of the family unit, the people I ran to started running from me. In Uganda, I was without the safety net I’d had in other counties  where a teacher would hold me through a seizure and even keep teaching. I started getting hurt. Once, I woke up with a broken ruler in my mouth, my cheek bleeding, because someone thought I’d “swallow my tongue.” That’s a myth - you can’t swallow your tongue! That ignorance led to injuries born of ignorance.

In university, with a new neurologist, I found stability. The seizures faded, and for years, I was seizure-free. I thought I was in the clear. But when my neurologist tried weaning me off medication, the seizures came within days. That’s when it sank in: I’d need medication for life. It was a gut punch. I’d done everything “right” taken my pills, followed the rules, yet here I was. My neurologist was retiring, and I’d hoped we’d part with a handshake, a mutual “good job,” and my freedom. Instead, I faced reality: this wasn’t going away. It took me a while but eventually, I decided I could reclaim that seizure-free life by staying disciplined with my meds. I accepted it.

Working in the community, I started noticing others with that same look in their eyes - a quiet plea for acceptance, a flicker of recognition. I’d ask, “Where’s Kate?” and be told, “She’s in the village.” Over time, I realised many of these “Kates” had epilepsy, and were hidden away because of stigma. Their eyes mirrored mine, and I felt a connection I couldn’t explain at first. It was like they were saying, “I recognise me!” Due to stigma, people with epilepsy are often invisible, even to their families. Children hide behind their moms, shy, not by nature but because stigma erodes their confidence. They’re left out of parties, school events, life - then blamed for not being “social.”

I learned my triggers: exhaustion, lack of sleep, extreme visual stimulation and even stress. Medication keeps me seizure free, but it’s why I might seem like a different person from one day to the next. That’s hard for others to understand. It also leaves me wondering what Id be like if I never took medication or had seizures in the first place. 

It started with me - Nina. I realized epilepsy wasn’t going away, and I wondered, Would people know what to do if I had a seizure? Then I met others who had it worse, people with no support, no voice. 

I had a platform, a chance to speak, so I used it. Sharing small tips, like staying hydrated or being honest with your doctor. These little tips made a huge difference for others. It wasn’t about me anymore; it was about them too. 

One thing I craved as a child was someone to check in, to say, “Hey, how are you?” That simple act can mean everything. That’s why I founded the Purple Bench Initiative - purple for epilepsy’s ribbon, a bench for the conversations we need to have. Picture two friends under a tree, talking through the day. That’s the vibe.

Nina, Dr Maurice Osire - a Clinical Psychologist and Josephine Karungi

The Purple Bench Initiative fights stigma, advocates for inclusion, and creates change for people with epilepsy. We dispel myths, like the idea that you can swallow your tongue (impossible) or that a spoon in the mouth helps (it can break teeth). We challenge policies, like those allowing divorce over epilepsy, which is absurd. We push for access to education, jobs, sports, events and different groups - spaces where people with epilepsy deserve to be. Our advocacy is about awareness and breaking barriers so people living with epilepsy can live a dignified, meaningful and impactful life.

We started with  the passion of friends and family, but as we grow, we need more support, funds to expand, to visit schools and teach kids and teachers how to respond to anyone having a seizure. I was that child, alone in a classroom, carried to the sickbay by a janitor who didn’t believe in “witchcraft”, just didn’t want to lose his job or could have secretly known the pain of having epilepsy. I felt unsafe, unseen. No one should feel that way. Non teaching staff are part of our trainings too because it’s awareness for all. 

Awareness and youth day celebrations (2023)

We have built partnerships to provide medication and psychosocial support for caregivers and person living with epilepsy. We create age-specific support groups, addressing unique challenges like stigma in school or women and epilepsy. Our Art for Awareness program uses artbooks to share positive stories about people with epilepsy, highlighting their talents and strengths, artistic abilities, anything beyond the condition. We work with village health teams and local leaders to reintegrate people living with epilepsy into their communities. Young people have graduated from university and done well in their exams.  That’s what this is about.

Nina on an awareness drive in schools

Myths persist: that people with epilepsy can’t have healthy children (untrue - they can and do), or that they’re “stupid” (far from it; many are brilliantly creative) but how will you know that when you never give them the opportunities? Parents, keep your kids on their meds and in school. It’s not just for them now, it’s for their ability to take care of themselves in the future. 

Growing up, I waited for someone to come to my school and talk about what was happening to me, like they did for TB or HIV. That person never came. So after knowing what it actually was, I became her. Through the Purple Bench Initiative, I’m making sure no one else waits in vain