Epilepsy Education in Uganda
Nina Mago1, CEO & Founder of the Purple Bench Initiative – Uganda2 is an inspiring professional living with epilepsy as well as teaching locals about the condition.
Favourite food: Tender steak with a garden salad
Favourite artist: Rebecca Ferguson3
- Location: Kampala4, Uganda5
- Favourite quote/saying: “A life lived in fear is a life half lived.”6 – Baz Luhrmann7
Two years ago, I founded the Purple Bench. A project then, that would create awareness, consequently resulting in the social acceptance of Epilepsy as a treatable- non-contagious condition in society. In turn, this would empower caretakers and persons afflicted by the condition and create a foundation enabling the enjoyment of fundamental human rights and equal opportunities for one to live a dignified and highly impactful life. Today, the Purple Bench Initiative – Uganda; is an NGO8 (Non-Governmental Organisation) with the same strong values, compassion, and empathy as before.
It all began with my diagnosis years ago. By the age of 6, I had experienced tonic-clonic9 seizures and seeing a neurologist whilst in Russia is when I finally had the condition confirmed. For seven years, I was constantly monitored and although I was on medication, the seizures kept on. Some days were without seizures, while some were rough; where I had seizures simply minutes into the day. In fact on particular days when the atmosphere was circulated with chemicals, I was advised not to attend school. I spent other days in the safety and comfort of my teacher’s arms, rocking back and forth, while she taught the rest of the class and occasionally felt for movement when I came around. Epilepsy remained a chronic condition accepted and managed for me while in my Russian school.
From a Ugandan perspective, the story was different. At the age of 12, I battled with the ostracism and betrayal by a society, which I assumed I could associate and relate with. Waking up on a dusty floor, wounded and disorientated while children made a spectacle of me through the window. Not being able to run to someone older for safety and not waking up in the safety and comfort of my class teacher marked the beginning of a now very scary new world. A tough world and one I was not ready for at the time. It made me reclusive, resulting from a failure to cope. I was “possessed”10, constantly bullied and always made fun of- always! It was the beginning of the end.
Locally known as “Ensimbu”11, Epilepsy sends shock waves through communities at the mere mention of the word. It tells a tale of loneliness, discrimination, and stigmatization. The secrecy associated with it keeps one shackled in fear and the terror of exposure will mute and drown you in misery. Society slowly saps your confidence and self-worth till all you know is nothing more than doubt. It is no wonder then that it’s a common misconception that a person with epilepsy can’t get much out of life. A good education is hard to attain with vast myths and misconceptions. The prospect of marriage is very minimal and employer prejudice makes for high levels of unemployed individuals with Epilepsy. Stigmatization shrinks social circles and so the prospect of marriage dwindles.
With proper diagnosis and medication, family support and my own courage, I gained stability with the condition years later.
I managed to attain a BA Degree in Ethics and Development Studies12 and worked in the world of Rural Development. I acquired an even greater appreciation of people in general, especially those battling Epilepsy and the challenges they face dealing with community’s often hostile attitude towards the condition.
I constantly searched for a figure to talk to and look up to - one that bared the same battle scars. Unfortunately, I couldn’t find one, leave alone one willing to share their experiences with me. The search went on in vain and left me empty. I needed someone to be a rock for me but people were as mute as I had become about the condition.
I took the decision to beat the fear of exposure and “came out of the shadows”. I now tell the story of Epilepsy in its entirety; a story that changes names, families, locations and continents and a story that I tell with conviction, confidence and pride to masses. One where each word builds up to a phrase, a sentence and a paragraph that creates Awareness of Epilepsy. I became the person that I had desperately been searching for; one that school going children look up to and aspire to be and more. The one that says “Hi I’m Nina and I battle Epilepsy” with a smile; because it’s not just about me, but more about the hundreds of people that I am a spokesperson for - up until they are confident enough to speak for themselves.
Through spreading awareness, I have met people from around the world that are doing a great job at spreading the word about Epilepsy but also coping with the condition and all that comes with it. They are strong, empathetic and caring individuals that continue to inspire me.
I, in turn, continue to foster change that will nurture the social acceptance of Epilepsy in communities; to empower those afflicted while creating a firm foundation that enables the enjoyment of fundamental human rights and equal opportunities for each to live a dignified and highly impactful life.
