Bernice steps on to the runway; her heart feels like a speeding car without brakes. When she takes the next step, the lights blind her. Amidst the cheers, she can hear the multiplied shutter of the cameras. ‘Don’t look at the lights,’ she echoes to herself. She drains out the noise, angles her eyes to a dark spot in the hall and whispers a prayer, “Please spare me today.” And she walks the runway. On the surface, she is the poster child for confidence and poise, but beneath the layers she is in a wrestling ring fighting for her life!
Let me take you back to May 2008 when everything was alright. Bernice was a 17 year old senior in high school. Then one evening, in the dining hall, the walls began to spin around her. She got up to go outside for fresh air but she didn’t get far past the door. She fainted.
That first episode was the beginning of a series of ‘attacks.’ She would get dizzy spells and collapse without warning. After she regained consciousness, there would be a gap in time making it hard for her to put the pieces together. This condition later progressed to involve her joints; causing aches and muscle weakness. “I would get so tired; to perform simple tasks, I had to mentally pull myself up by the bootstraps."
In class, her concentration span became as short as the life of a fly. She couldn’t get through a 40 minute lesson without spacing out. Sometimes she would be having a conversation with a friend, then she would zone out for a few minutes; by the time her mind caught up, she had forgotten what she was talking about. No matter how much she tried to concentrate she always felt a day late and a dollar short.
“My dad was called to school to take me to hospital where they ran all kinds of tests which turned out normal.” The doctor concluded she was having anxiety attacks and started her on antidepressants.
“I didn’t argue but it made no sense to me. Is it possible to be anxious and not know it? And what was causing this anxiety?”
They told her it was probably the upcoming final exams but Bernice had done several other exams in the past, why would this one be different?
Her fainting spells continued. Luckily, she would get an ‘aura’ just before and had to quickly find a place to sit or lie down. “It’s like I was in a race with myself.” Because her attacks became so frequent, she ended up missing chunks of school and would oscillate between home, the hospital and school.
“Once, the headmistress asked to talk to dad. She suggested I leave the school for fear that my grade might lower the aggregate grade of the school.”
See, Bernice was in a renowned National School that was garnering for the top position that year and to be at the top, everyone needed to pull their weight yet Bernice could barely stay conscious long enough to sit through a class, let alone an exam.
“You need to consider moving her to another school,” the headmistress said. But she didn’t want to leave.
The pressure of the illness engulfed her; threatening to swallow her whole until she decided to save herself from her reality. It’s not so much that she wanted to die, she just wanted to wake up to a different life. Or maybe she wanted to die.
“My mind was so screwed up I couldn’t even decide if I wanted to die or not.” So one day she flooded her bedside table with her antidepressant pills, counted them and thought, ‘That should do it,' and thought to take them.
She didn’t. She fainted and saved herself from herself!
Her aunt found her and figured out what she was trying to do. “That attempt earned me psycotherapy sessions in addition to everything else. I suspect the more stress I faced, the more the spells would occur. The pressure to excel academically was real — in spite of my condition.” The expectation to perform highly weighed heavily on her. “At times I felt the weight of the school’s performance depended on what grade I would get.”
Her fellow students however did not want to leave her behind. They would take notes for her in her absence and take turns to teach her when she was in session. “I remember there was a teacher who would call me aside, hold my hands and pray for me.” She was never left alone. Some friends would even stand outside the bathroom door to ensure she did not faint while taking a shower.
October came and it was exam time. She did some papers in the school clinic or if she was well enough, she would join the rest in the exam room.
“I remember I zoned out during my math paper. I was writing at some point then I just zoned out and slept.”
It’s a wonder when her results came and she had scored a B+.
“I was so excited about my grade. With the exams behind me I figured the anxiety attacks would end but they didn’t.”
She went on to join The University and learnt how to tailor her life around her ‘condition.’ She had to depend on others to move around, cook, do her daily chores.
“Anytime I made a friend, I went to great lengths to explain to them that I would sometimes faint without notice and what they needed to do if it happened.” People rarely believed her. Some thought she was pretending or craving attention. Others would whisper, “There goes the girl who likes to faint,” when she walked by.
“I was struggling to accept that this was my new normal. I would go through crying spells where I would ask God why me?”
It was not until 3 years after the first incident when the University doctor recommended a certain test for her. An EEG he called it.
“He referred me to a hospital for the mentally ill and I thought he was indirectly saying I had gone mad.”
“Make sure your hair is plaited before you go for the test,” the doctor told her.
“Why did they want my hair plaited? Were they planning to commit me?” I wondered.
At the hospital, she was ushered into a room and asked to lie down on a stretcher. They then stuck several wires to different points on her scalp (I guess that explains the plaited hair) on one end and to a machine on the other. “They asked me to stay still as they recorded my brain activity.”
When the report came out, she was told she had a seizure disorder. Epilepsy they called it.
“I was so relieved! Finally, I wasn’t the girl who was a bag of nerves anymore. The girl who some people suspected was pretending and who others thought just needed to calm down. I had a disease and it had a name!”
But what she thought was the end of a process was the beginning of a journey.
Bernice was admitted to hospital and started on a cocktail of anticonvulsants. 12 tablets in total. “The drugs took an even worse toll on me. I would be drowsy most of the time. They would knock me out whenever I took them.” If attending classes in high school was hard, in Uni it was nearly impossible. Her mind was always foggy and her memories would be washed away like words drawn in the sand.
She felt herself sinking back to despair and needed something to distract her from this illness. That is how she discovered the runway. Bernice had loved modelling from when she was 9 years old. She had a family friend who was a model and she admired how glam she looked. “I wanted to be a model. So I would watch my friend and mimic her. I simply loved the stage.” And so in first year at the University she gave it a try and won Miss Upper Kabete. Then in third year she was at it again and won Miss University of Nairobi.
During this particular pageant, she fainted backstage.
“The heat, the flashing lights, the adrenaline are a cocktail of disaster for a person with epilepsy and you only know a trigger after it hits you the first time.”
She passed out before the Q and A session and by the time she came to, it was her turn to go onstage to answer some questions.
“I remember feeling dazed. I had no idea what was going on.”
Yet she was still crowned Miss University.
It is through these titles that she and others formed a group called the Runway Environmentalists and started tree planting projects. They also cleared dump sites and visited childrens’ homes. “By the time I was clearing Uni we had planted so many trees our campus won the Total Eco challenge as a result.”
Despite her meds, she was not seizure free. Her invisible ‘friend’ followed her everywhere. A friend she didn’t care much for even if it had become a part of her life. Who would want a friend who attacked with no warning and sometimes with so much violence? This friend would sometimes injure her body, sometimes steal her memories and injure her mind. “Do you want to know what a seizure feels like? It’s like something gets hold of your skull and squeezes it then throws it in a washing machine where it is flipped over and over.” It made her feel so separated from the world.
So she went on the internet and looked up support groups. And found one called ‘Youth on the move.’ A support group of people living with epilepsy who met every weekend. Finally, there were people like her! She started to attend meetings and when the founder decided they needed a National Epilepsy Coordination Committee, she was chosen as The Ambassador for Epilepsy in the country to create awareness and start the conversation on epilepsy.
Because we live in an African country, many people attribute epilepsy to witchcraft or demon possession and hide their children from society. People who live with epilepsy are prone to injury and a good number suffer from burn injuries, head injuries, fractures and other complications. Several lack basic education because their parents do not want them to go to school. So they remain secluded and live very lonely lives. This is what Bernice wanted to speak against.
She ran for Miss World Tharaka Nithi and won and then ran for Miss Kenya where she won the title ‘beauty with a purpose’ because of the epilepsy.
“I learnt quickly how to deal with the flashing lights and would train my eyes on where to look to avoid having a seizure on the runway.”
Then in January 2014, something happened. Bernice woke up with a clear head. “I was on my menses which used to be a trigger. I was more likely to have seizures during that time of the month.” But when the year turned, she was on her menses and didn’t feel like her mind was clogged. “I was at home in Meru and decided to do something I loved but had not done for years. I milked a cow.” Previously that was an action that would clog her mind and cause her to zone out but this time, nothing happened. On a slender filament of hope, Bernice started to experiment with various activities until it stopped being an experiment and became a reality. As suddenly as the seizures came, they had left.
She has never had a seizure since.
After extensive discussions with her doctor, her medicine was tapered down until they were stopped. She has not been on meds to date.
“Call it whatever you want. I call it a miracle that I have been seizure free since 2014.”
Bernice is now married and a mother of three. She has been a silent advocate for a couple of years but is gearing up to come back on the scene.
“I started off as a fashion model but now I want to be a role model to young people living with epilepsy. To empower others you have to be brave enough to share yourself.”
As Narrated to me by Bernice Mugambi
Miss World Tharaka Nithi
Epilepsy is a condition that causes people to have repeated seizures that are caused by abnormal electrical activity in the brain.
Seizures can make you pass out, move or behave strangely.
Epilepsy can start at any age.
There are different kinds of seizures. Each with a different set of symptoms. Most last only a few seconds or minutes.
Some people often pass out, get stiff, and then have jerking movements. Others have less dramatic symptoms.
E.g. some people have shaking movements in just 1 arm or in a part of their face. Other people suddenly stop responding and stare for a few seconds.
Sometimes, people can tell that they are about to have a seizure. They have a certain feeling a certain smell. This feeling or smell is called an “aura.”
Tests: You will probably have 1 or both of the following:
●EEG — An EEG measures electrical activity in the brain
●CT or MRI scan
Treatment: — Epilepsy is treated with anti-seizure medicines. These medicines can’t cure epilepsy, but they can help prevent seizures.
There are different anti-seizure medicines. The right one for you depends on your seizures and other factors.
You should know that:
●These medicines can cause side effects. They can make you tired or dizzy.
●They can affect other medicines you take. Anti-seizure medicines can keep birth control pills from working well. This can lead to an unplanned pregnancy.
●You might need regular blood tests to check the amount of anti-seizure medicine in your body.
Will I need anti-seizure medicine for the rest of my life? — It depends on your seizures. If you don’t have any seizures for 2 years, your doctor might talk with you about stopping your medicine.
But don’t ever stop your medicine on your own.
To lower your chances of having more seizures, you can:
●Take your medicine as directed
●Get enough sleep
●Eat a healthy diet
●Avoid alcohol or using drugs
What else can I do if I have epilepsy?
You should:
●Wear a medical bracelet to let others know about your epilepsy.
●Let family members and friends know how to help you if you have a seizure. They can position you so that you will not hurt yourself, but they should not put anything in your mouth.