We spoke to
Sekela Ngamilo, a 20-year old law student from London. Sekela tells us about
acting, epilepsy and the potential positive effects of lockdown for those with
chronic health conditions.
“There’s always the fear that people’s misconceptions mean I
won’t get hired, but on the flip side I can’t not tell people, and I know that
it shouldn’t be seen as a burden. Over time, it has become something I’ve grown
comfortable with and am happy to do. Discrimination comes when people don’t
understand, so the more we can increase awareness, the better.”
What is your story with chronic illness?
Around the time of my A-levels, I began having seizures, but had no idea what they were. Doctor’s appointments seemed to lead to dead ends, so I continued with my exams until a severe seizure led to a trip to A&E and finally a diagnosis. In the middle of my exams I found out I had temporal lobe epilepsy.
I was put on strong medication and realised my life was not going to be quite the same. Temporal lobe epilepsy causes me to have amnesia after my seizures meaning that I don’t remember that I have them or when I’m in a postictal state (how a person is after a seizure). At times I could have one or multiple and end up somewhere with no idea how I got there. Despite the amnesia, I knew I was having seizures mid-exam; I would look up at the clock, black out and look up again and a whole twenty minutes would have passed. I could no longer commute alone, go on nights out, stay up late, or take part in certain activities. My life took on a new rigidity: I now had to keep track of where I was and what I was doing, and stick to a routine to accommodate the heavy medication I was now taking.
My place at the University of Oxford was hinged upon these exams, but it was not until I was two-thirds of the way through that I was allocated extra time. Not only had I lost my independence, but I felt I had suddenly lost the intelligence and abilities which my whole academic trajectory had been guided by.
Sekela, a student who enjoys acting, art, knitting, boxing and dance.”
How did your condition affect
My epilepsy added
a whole other dimension to my relationships. I was having to try and understand
my seizures through what other people were telling me, which in itself was
scary because epilepsy is a hugely misunderstood condition: most people think
epilepsy means suddenly dropping to the ground and having seizures. This just
isn’t true, so the people around me were attempting to understand it as much as
helped was making friends in similar situations, especially when I started
university. I met people who also had epilepsy or other chronic illnesses, both
through Epilepsy action (an organisation providing support) and my church. It
helped me to feel human again.
You have experience in the acting
industry- how did having epilepsy impact trying to secure work?
diagnosis, I had a seizure on the set of a short film I was working on. We had
just finished filming a scene in which I had been swimming, and remember sitting in the changing room with
everyone crowded round me. What sticks out is the support I was surrounded by
and the increased mindfulness that followed.
On a separate
occasion however, I was asked by a casting director “how did you relate to this
character?” When I explained that I was able to understand the character
through my experience of epilepsy, everyone in the room’s faces dropped. I knew
in that moment that there was no chance of me landing the job.
Being in the
later stage of the audition process brings conflicted feelings when it comes to
being open about my epilepsy. There’s always the fear that people’s
misconceptions mean I won’t get hired, but on the flip side I can’t not tell
people, and I know that it shouldn’t be seen as a burden. Over time, it has
become something I’ve grown comfortable with and am happy to do. Discrimination
comes when people don’t understand, so the more we can increase awareness, the
When it comes to the world of work and chronic health issues, what needs to change?
Because of the
misconception that epilepsy is just one type of seizure and the lack of
recognition that epilepsy can be controlled once people have found the
medication that works for them, there is a general idea held that people with
epilepsy can’t work. In some cases this is true, but in many it isn’t, and many
people’s seizures are not controlled because of the lack of research and
funding when it comes to epilepsy. Although we are blessed with a vast amount
of technology which can help (MRI’s might not be fun, but they are useful)
there seems to be a lack of government incentive into epilepsy research itself.
In Billy Caldwell’s case (a boy whose seizures were controlled by cannabis oil)
for example it seemed that there was more concern about crime than there was
care about people’s actual lives and their ability to function.
My consultant is
an angel- he doesn’t view his patients simply as epileptic, he sees them as people
who have epilepsy, and asks me about other things going on in my life and how
they might be contributing to the seizures. The world, employers included, need
to see people with epilepsy as just that - people.
What advice would you give to someone with epilepsy who wants to work?
Remember that you
have a lot of strength- strength that comes from your experience with epilepsy.
When an interviewer or an application form is asking about a time when you’ve
shown resilience, think of the times you were stressed out but did not let your
epilepsy, or the chronic condition you are dealing with prevent you from doing
things. Always remember that you’ve achieved things in spite of that.
I also think the current lockdown situation
affords a lot of opportunity for optimism. Seeing how many major corporate
workplaces have tailored things to make working from home productive means
those who need care or can’t work in an office everyday could have a lot of
doors opened. You could be part of a law firm or consultancy firm without
having to leave the house.