Why I speak up about living with epilepsy | Sitawa Wafula

I have a confession.

I have been in an affair

since I was 17 years old.

I wish I could talk about butterflies in my stomach

or maps I drew on the ground

when I think about this affair,

but I cannot.

I wish I could talk about sweet words spoken

or gifts that I received

from this affair,

but I cannot.

All I can tell you about is the aftermath,

about days I spent constantly asking:

Why, why, why me?

I remember how it all began.

I was in my final year of high school,

and my class had just won in sports,

so we were singing and dancing and hugging each other.

I went and took a shower.

Then I went for dinner.

And when I sat down to eat,

my teeth started chattering,

and so I couldn't put the spoon in my mouth.

I rushed to the nurse's office,

and because I couldn't talk, I just pointed at my mouth.

She didn't know what was happening,

so she told me to lie down,

and it worked --

after a few minutes, the chattering stopped.

I was about to dash out, and she told me --

no, she insisted -- that I go up to the dormitories to sleep.

Here I was in my final year of high school,

just a few months from doing my end of high school exams

and a few days from doing a set of exams we call here in Kenya "mocks,"

which are somehow meant to gauge how prepared one is for the final exams.

There is no way I was going to sleep

and let a set of exams mock me.

I went to class, sat down,

took my Kenyan history notes,

and there I was, down Kenyan coastal town,

with the great Mekatilili wa Menza,

the Giriama woman who led her people against British colonial rule.

Then, without any notice,

my left hand started jerking,

and it was as if I was marking imaginary papers.

In and out it went,

and with every stroke, one by one,

my classmates stopped concentrating on their reading

and started looking at me.

And I tried really hard to stop it,

but I couldn't,

because it had a life of its own.

And then, when it was sure everybody was looking at us,

in its final show and official introduction,

I had my first full-blown seizure,

which was the beginning of what has been a 15-year-long affair.

Seizures are the trademark characteristic for most types of epilepsy,

and every first-ever seizure needs to be assessed by a doctor

to determine if one has epilepsy

or if it's a symptom of something else.

In my case, it was confirmed that I had epilepsy.

I spent a large chunk of my time in hospital and at home,

and only went back to do my final exams.

I had seizures in between papers,

but managed to get good enough grades

to be admitted for an actuarial science degree

at the University of Nairobi.

(Applause)

Unfortunately, I had to drop out in my second year.

I didn't have good enough coping skills

and a support community around me.

I was lucky enough to get a job,

but I was fired from that job when I had a seizure in the workplace.

So I found myself in a space

where I was constantly asking myself

why this had to happen to me.

I lived in denial for a long time,

and the denial was maybe because of the things that had happened,

dropping out of school and being fired from my job.

Or maybe it was because of the things I had heard about epilepsy

and about people living with epilepsy:

that they would never live on their own;

that they would never travel on their own

or even get work;

that they were outcasts,

with a spirit in them that they needed to be delivered from.

And so the more I thought about these things,

the more my seizures became,

and I spent days with my legs locked,

my speech became blurred

and on days on end, this is how I'd be.

Two or three days after a seizure,

my head and my hand would still be twitching.

I felt lost,

like I'd lost everything,

and sometimes,

even the will to live.

(Sigh)

I had so much frustration in me.

And so I started writing,

because the people around me didn't have answers

to the questions that I had.

And so I wrote my fears

and my doubts.

I wrote about my good days and my bad days and my really ugly days,

and I shared them on a blog.

And before long,

I began to be seen and heard by people who had epilepsy

and their families,

and even those who did not have the diagnosis.

And I moved from that girl who constantly asked why me

to one who not only self-advocates,

but does it for those who are yet to find their voices.

(Applause)

My seizures are greatly reduced, from two to three times a day,

to sometimes two to three times in one year.

I went on --

(Applause)

I went on to employ five people,

when I began what was Kenya's first

free mental health and epilepsy support line.

And I travel --

(Applause)

And I travel to speak about my affair,

all these things that I had been told

people like me living with epilepsy could never be able to do.

Every year, a population as big as 80 percent of Nairobi

gets diagnosed with epilepsy

across the globe.

And they, like me,

go through the emotions of stigma and exclusion.

And so I have made it my life journey

to keep these conversations going,

and I keep confessing about my affair

so that those people who do not have the diagnosis

might know and might have a constant reminder

that it is alright to engage with people like us,

that as long as they pull down the walls of stigma and exclusion,

that we, just like them,

can be able to take anything life throws at us.

Thank you.

(Applause)