Last week, Botswana joined the world in commemorating world purple day where locally Young Epilepsy Botswana (YEB) hosted a celebration in remembrance of lives lost to epilepsy.
YEB was founded by Ithabeleng Khan, 25, in her teenage years. Diagnosed with epilepsy at just 14, Khan has since overcome many traumas and difficulties because of her condition.
This week, The Voice’s SHARON MATHALA sat down with the inspirational young woman for an insight into her extraordinary life.
Kindly introduce yourself to our readers.
I am an average 25-year-old trying to live as normal a life as possible. Normal meaning: seizure free, medication free and with no restrictions.
I am a mother and am aspiring to be a teacher to young children but mostly to those living with any challenges/disabilities
For those who don’t know, what is epilepsy?
Epilepsy is a chronic condition. One randomly has seizures and the scary thing about is that you never know when it will happen.
You have been living with the disorder for over a decade now. Take us through the day you were diagnosed.
I was diagnosed with epilepsy at the age of 14. I remember I did not quite understand what was happening. I blacked out.
I woke up in hospital and was told I had experienced a seizure. I mean I was a healthy child up until then.
Had you heard of epilepsy before then?
I really had no clue what epilepsy was, even now I am still learning about it since it is very complex.
What sort of challenges have you experienced?
Living with this condition has really affected mostly my emotional state because I watched my life change right before my eyes.
My life changed in just one day. Since then I have experienced a lot of traumas because seizures are very traumatic and come with memory loss.
I was bullied a lot in school because of it and it made me have low self-esteem.
I experienced depression at a very early age and was at times suicidal.
Did your condition affect your performance at school?
I would say yes. Look, the seizures more than anything affected my self-esteem.
They come with temporary memory loss and I would be too embarrassed to ask my peers what happened and so it did a number on my self-esteem.
I hated myself and I did not put much effort into my schoolwork because I did not understand what was happening to me.
Talking about difficulties during your school days, I understand you were once expelled from school?
Oh yes. Firstly I was very athletic but I had to drop out of school sports because you never know when the seizure would hit and that was traumatic for me.
But to answer your question, yes. The school gave me some story about my grades being too low for the school’s standard.
I was shocked because they were so quick to choose or suggest my expulsion than to hold me back another year.
But deep down I know why they decided to chase me out of school.
On a more positive note, you eventually turned your situation around and formed Young Epilepsy Botswana – take us through that.
Forming YEB was really out of frustration. I had been subjected to a lot of stigma even from my close family relatives.
I thought to myself how many others like me go through the same.
I then did a lot of research about the condition, and together with my family, we decided to form the non-profit organisation to help create dialogue around epilepsy.
And what does being an ambassador for YEB mean to you?
Being a YEB ambassador for me is an honour. I get to represent the youth of Botswana that suffer from the same condition I do.
I have learnt to embrace my condition but that took a lot from me.
So I hope to use my story to inspire others to know that living with this condition is not anyone’s fault.
What is the organisation’s main goal?
To create dialogue and understanding. Our future plan is to build a facility or centre that will accommodate and help youth living with epilepsy.
The centre will also teach the general community at large about epilepsy and first aid.
What are some of the difficulties you have overcome as a person diagnosed with epilepsy?
I would like to think I have come a long way with this journey.
I am a lot stronger emotionally and mentally.
I have chosen not to allow this battle to win and I remain to have hope for better medication and or a cure.
I am 15 months seizure-free and currently living a ‘normal’ life.
What is the most common misconception about epilepsy?
The one misconception about epilepsy is that it is a disease therefore also implying that it is contagious.
Do you believe there is enough support from government for people diagnosed with epilepsy?
I don’t think our government is doing bad but there is a lot of room for improvement.
I believe there is more to be done to educate our nation and aid those affected by the condition.
Historically, epilepsy is associated with traditional religion. Have you found that to be the case?
It is definitely no secret, especially in Africa, that because the most common seizure is the one whereby a person falls and has a series of jerking and foaming of the mouth, people normally associate it with religion or witchcraft.
Getting a bit more personal, how do you spend your spare time?
In my spare time I try to focus on leading a normal young adult life.
At the moment I am working on getting a diploma in Early Childhood Development.
I am also working on getting a driver’s licence.
How has motherhood changed your life?
Motherhood has definitely made me appreciate life more and not give up on myself because I have someone depending on me.
But knowing that this condition is hereditary scares me a little.
And finally, TGIF, what will you be up to this Friday?
My Fridays are mostly for family.
If I am not with my extended family I am with my daughter watching cartoons.