Rising from the abyss of epilepsy-related stigma, discrimination and pain, Angela Asemota is giving succour to families affected by the condition. KINGSLEY OBOM-EGBULEM on a recent visit to her foundation in Benin City, shares Angie’s triumph over epilepsy and the joy in sharing that victory with numerous families in Edo State
Before 2001, these were the language you have to speak if you are to have any dealings with Angela Asemota. She was a cloth merchant of immense repute and the first choice for most customers in Benin.
“I was a big time fabric dealer. I also sold head ties, ladies shoes and bags”.
Today, Angela is in a new world, far removed from the world of fabrics, fashion, and accessories. She is now the mother of people living with epilepsy. And unlike the inviting and enchanting world of fashion, this current world-the world of epilepsy is often a dark, lonely and silent world of shame.
“That is why people like me must continue to do this work. That is why we must speak out openly and let the world know that epilepsy is not a death sentence; you did not commit an abomination or your family did not attract a spell because of epilepsy, so come out and get help which is available and live a normal life”.
That is Asemota’s constant message any day you engage her and this seems to have positioned her as an oasis for many families who have found themselves epilepsy’s unenviable desert. Of course, no one could have been strong enough to play this role but for Angela. She wears the shoes and thus knows exactly where it pinches.
“My first encounter with epilepsy was when my son started showing signs of epilepsy although as at that time I didn’t know what it meant. He was in Senior Secondary (SS1) at Lumen Christ, Uromi, Edo State and even the school couldn’t understand what was happening to him”.
The young teenager was not having generalised seizures; so he wasn’t falling, jerking or foaming in the mouth each time he had an attack.
“But I knew, this wasn’t normal, so we started running around in search of help”, she said.
That is also marked the beginning of several years of anguish for Asemota and her family.
“Everyone deserted me; even my close friends left me because I was no longer living their kind of life style. I was not even living up to expectation any more. Having a direct encounter can be very devastating especially when it happens to the child you have put all your hope on.”
Left alone, Asemota needed to prove a point the greatest of it is that epilepsy is not a death sentence and it is not insurmountable.
“So I took up the challenge with the help of God the most high and today my son has been on treatment for five years and now and never had seizures. He takes his medication regularly and currently studying pharmacy at the Ambrose Alli University,Ekpoma. This gives me joy today even though it was an ugly experience hence I’ve resolved that no woman will ever shed the tears I shed out of ignorance of epilepsy.”
The birth of Angie Epilepsy Foundation (AEF) is an extension of Angela’s resolve to create a paradigm shift with respect to epilepsy by putting a face to the condition and giving it a voice that is not only soothing and credible enough for families to trust but also loud enough for them to hear and know the truth about epilepsy.
“People living with epilepsy and their families are going a lot of pain and the biggest source of that pain is ignorance. I know it because I was there. My liberation came the moment it dawned on me that epilepsy is not a demonic attack, was not a spell cast on my family or something I attracted like I was accused by people and you can’t get this liberation and not want to liberate others who are currently where you used to be”.
Asemota’s son, now a 21, is still dealing with issue that would one day prepare him to boldly speak up for other patients who are either dealing with or have overcome epilepsy.
“There are people who no longer take medication and are not having seizures for years this also helps when it is detected early Im sure my son would get to that point soon but Im happy where we are today looking at where we are coming from”, she says.
Treatment for epilepsy can take a long time and according to Asemota patience is a key virtue for getting the right treatment outcome. More patience is also needed especially when dealing with stigma and discrimination resulting from the condition and that informs Asemota’s longer term aspirations.
“My aspirations are that someday people living with epilepsy in Africa will overcome the stigma associated with epilepsy and live normal lives. Im certain the myths associated with epilepsy will be eradicated and people will become aware of the true causes of epilepsy that would automatically address stigma”.
That may sound like an audacious dream but its definitely one that Asemota is willing to pursue with all that she‘s got and the source of her resolve is a deep sense of gratitude; gratitude to God for how well her son has turned out in the face of initial hopelessness and despair.
“I was very rich but my son was not well. Now I don’t have much, but my son is alive and well, that makes me feel very rich and Im willing to share this feeling with anyone or any family affected with epilepsy.