Predicting The Future For Africans Living With Epilepsy

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<p><em>Sitawa Wafula - Living with epilepsy and Founder of My Mind, My Funk which ran Kenya’s first free mental health and epilepsy support line</em></p>
Image by Thumbi Mwangi

Sitawa Wafula - Living with epilepsy and Founder of My Mind, My Funk which ran Kenya’s first free mental health and epilepsy support line

Growing up, I discovered that l could predict the future. One of my first predictions was in high school: I declared that my entire class would pass the mathematics exam, and, sure enough, we did. Of course, this was only after I used nearly all of my free time to make sure my classmates understood the calculations and formulas.

I learned that you can predict the future if you do the hard work.

I also learned that I really love numbers; I love how definite they are, how one plus one is always two and how two plus two adds up to four. I think I may have inherited this love of numbers from my father. He was an accountant and some of my first memories are of sitting on his lap, watching as he studied for his Chartered accountancy exams.

I planned to study numbers in university and I was excited when I heard about the subject of actuarial science. It is a mathematical discipline that uses units — like probability, calculus and statistics — to assess and calculate risk. Insurance companies use it to calculate premiums, other types of companies use it to forecast trends and government agencies utilize it as they plan their budgets. In short, it is the perfect subject for me for combining my passion for numbers with an opportunity to predict the future.

I looked forward to one day earning a living doing what I loved and being among the first Africans in the field and breaking barriers by being pioneering as a young African woman this field. Armed with clarity about my future, I asserted myself in my final year of high school with both eyes focused on the road ahead.

Then one evening something happened that I hadn’t predicted; my teeth started gnashing. It was difficult for me to eat my dinner. The school nurse couldn’t figure out what was happening and advised me to rest. After a nap in the nurse’s room, the gnashing stopped and she suggested I rest in the dorms instead of attending night reading class. But I thought I knew best and I figured I could rest when I’d finished high school in a few months’ time.

So I went to class. I was reading about Kenyan history when my left hand started jerking, which attracted the attention of the whole class. The movements became aggressive and fast. I tried my best to hold it still with my right hand but the force was out of my control. I started crying because I didn’t know what to do and my classmates, who didn’t know how to help, just stared and whispered. I had my first full-blown seizure, marking the beginning of fourteen years of falling down in convulsions every week.

I cannot recall what happened next, but when I finally came around, people say I was frozen like a statue — my whole body was stiff and my leg locked on the chair seat. The nurse and teacher-on-duty had to carry me on the chair to the school van. I was taken to a nearby clinic before being transferred to a hospital. Eventually doctors told me it was epilepsy; a neurological disorder characterized by seizures. Its causes include stress, trauma to the head, complications at birth, brain tumors, stroke or illnesses like meningitis and TB.

By the time the doctors decided I could leave my bed, I had missed most of my final term. My parents suggested I skip exams and repeat my final year. I wouldn’t have any of it.

Back at school, I was constantly tired from the medication I’d been prescribed and everyone around me walked on eggshells, scared I might fall on them. Those who once came to me for mathematics sessions opted to struggle on their own rather than seek my help. The surety and confidence I had predicted about my future was slowly being replaced by fear and uncertainty.

Despite having seizures before and during some of the exam papers, my grades were good enough to secure me a spot at University. In September, I attended the University of Nairobi to pursue my dream. I could already see myself in a corner office punching numbers and predicting the future.

My doctor gave me strict instructions on how to take care of myself and reduce the seizures. All l had to do was make sure I took my medication, got enough sleep and ate well. But as the days went by and the university workload increased, these coping mechanisms proved ineffective and, reluctantly, I had to drop out in my second year. Those around me did not have sufficient information and skills to support me and I found myself in a space where I was scared, with my dreams shattered.

After a few months, fate intervened. A family friend introduced me to a man who ran an insurance company. He knew about my epilepsy, but he agreed to give me a job. I had to start from the bottom, but I did not mind. With hard work, I believed eventually I could achieve my dream job.

I spent the weekend before I started my new job ironing my suit. It was mismatched, the prints and patterns were all over the place but it was a suit nevertheless. As I made sure each pleat was in line, I couldn’t wait to seize this new opportunity and show myself worthy of it.

On Monday morning, I reported to the office and soaked in the blue decor as the director’s assistant, who was almost my age, took me through the ropes. We immediately clicked and soon we began a routine of meeting early at the office to exchange notes and color each other’s dreams to make them look like a reality.

It didn’t take me long to learn the corporate way of life, the company’s system and my place in it. I was able to work with clients, first under supervision then directly, fueling my drive to make it as one of the first female actuaries in Africa. I soon saw a chance to shine when the company acquired a major client and had to meet a big contract deadline. Everyone in the office was expected to chip in with the preparation process and to work over the weekend. We spent Friday afternoon learning how to use a new fancy photocopier to prepare for the grand meeting on Monday.

Having worked with clients directly, I was prepared to play a big role in this contract, but instead I received the “honorable” duty of making all the photocopies and preparing the paperwork. But I did not complain. Instead I reported to the office on Saturday and took my position. I loaded the copier as we’d been instructed and I placed the first paper on it and pressed start. I cannot remember exactly what happened next — I came round to find myself in the hospital after having had an epilepsy seizure.

The doctor informed me that I had photosensitive epilepsy, a type of epilepsy unknown to me. He explained that people with this condition can have seizures triggered by direct contact with flashing lights sources such as from cameras, some TV or video content or, like me, the repeated flash from the photocopier. So in addition to taking my medication, getting enough sleep and maintaining a healthy diet, I also must never smile at a flashing camera or use a photocopy machine as either could flash me into unconsciousness.

The doctor discharged me and at home, I looked forward to Monday morning. I planned to arrive early at the office and redeem myself by getting the paperwork in order before the meeting. As I walked in at 7 a.m., the receptionist told me that the director had given me two weeks to rest. Naively, I was pleased by this news, not because I did not like my job, but because I thought the director understood how hard it gets at times when you have epilepsy. It was a relief to feel supported after having dropped out of school because of lack of a supportive community.

During my time off I rested and caught up with friends, but I couldn’t wait to go back to work. After 14 days, I arrived to work early with an eagerness to catch up and prove that I could produce results despite my health status, but the receptionist informed me that the director had added two more weeks to my leave. This time I did not feel so supported. In my head, this two plus two more weeks was definitely not adding up to four. In the evening, I called my friend, the director’s assistant, and asked her if she had heard anything.

After a moment of silence, she reluctantly replied that the director had said they could not work with “someone like me,” meaning someone with a health condition like mine. She added that the director did not yet know how to let me go. After we hung up, I cried and cried my all.

Epilepsy is not widely understood in Kenya. A lot people attribute it to witchcraft or punishment from God and those with the diagnosis are discriminated against and excluded from participating in activities as most people think it is contagious. Statistics indicate the prevalence of epilepsy is 18.6 per 100,000.

I planned to defy expectations. I told myself that I would never again want to be in a position where people did not take the time to see the person beyond the illness.

I wrote down my feelings, raw as they were, first in my journal and later started publishing them online. Soon, I was sharing good, bad and ugly days almost every week and people were finding my words and reading them. It was therapeutic to share my work and get feedback over email as a lot of people shy away from responding on the comments section mostly due to stigma.

After four years, an incredible thing happened. Google Africa approached me with funding for my blog because I was speaking about issues people in Africa consider taboo. In 2014, I used that funding to set up and run Kenya’s first, free mental health and epilepsy support line. To date, it’s helped 11,000 Kenyans by linking them up with mental health service providers like counsellors and psychiatrists who see them pro bono or at a subsidized fee, attaching them to support groups, providing basic mental health and epilepsy information like first aid and sign and symptoms to look out for.

Although I was no longer directly punching numbers, the number of people who reached out through the support line gave me a new lease on life and clarity on what my next step would be; an advocate for those who, because of their health status, go through some of the same things I had been through; like dropping out of school and facing workplace discrimination.

I took pride in the fact that despite being placed in an “unemployable” group because of my health status, I defied the odds and was able to create a job for myself as well as employ five people to staff the hotline.

Now I know I can still predict the future. Not with numbers but with words and through experiences. I predict an Africa where people like me, living with epilepsy, will have access to proper information about the causes of their condition, which symptoms to look out for and where to go to receive appropriate medical support and how to reduce the number of seizures.

I predict an Africa where people who meet people with epilepsy will replace ignorance, fear and discrimination with correct information. They will be knowledgeable about how to give basic first aid; they’ll learn that this condition is not contagious — we can touch you, we can eat with you, we can work with you. They’ll know that a seizure and recovery period may last for 20 minutes but then the person with epilepsy will be back and ready to continue to play their part in the development of this great continent.

I predict an Africa that isn’t divided up into people like you and people like me but just people looking out for each other, sharing knowledge about conditions like epilepsy and working together for the good of the continent.

I’m willing to do the hard work to make these predictions come true by constantly sharing my journey and using the lessons I have picked along the way to help those coming behind me and make a contribution having a conducive society with systems and structures for people living with epilepsy. Will you join me?

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