In commemoration of International Epilepsy Day, we asked people living with epilepsy, friends of KAWE to share their story, in line with this year’s theme of putting epilepsy in the picture.
After posting the story of Kabemba Mwale as featured in the Lusaka Times, we got responses from within Kenya from people leaving with epilepsy who would like to share their experiences. This is the story of Alex.
KAWE: When did you find out you had epilepsy?
Alex: It was in 2007, when I was in class 8. I started to have seizures that would last up to eight hours. I would be fatigued after that and would miss school for three days.
KAWE: Did you know what it was right away?
Alex: No, my father would take me to the hospital, but all they did was to let me rest and when the seizure stopped, I would sleep for about two hours then we were sent home.
KAWE: That must have been challenging, it must have affected your school work.
Alex: Yes, very much. You know, after a seizure, It would take me a while to remember things.
KAWE: You told me you buy medicine form the chemist now. When did you start to take epilepsy medication?
Alex: After sometime and going to different hospitals, I was put on two types of epilepsy medicines.
KAWE: Did these reduce the seizures?
Alex: Hmm, yes. But now my big problem was, after taking one of the drugs I would sleep the whole day. So I went back to the hospital and the dosage was adjusted.
KAWE: How did your family approach your condition/ Did they ever associate it with being cursed?
Alex: My family has been very supportive. My father decided to go the medical way from the start, even though some relatives had the idea that the reason I had epilepsy was because the person I am named after was a traditional healer/medicine man.
Another way my family supported me was I was never allowed to cook, swim, or stand on the edge of buildings. In fact I’ve never cooked in my life.
KAWE: Tell me, do you take other measures to protect yourself?
Alex: Well, I don’t think I can explain it clearly but usually, I can tell when a seizure is coming.
KAWE: It’s called an aura, how do you feel?
Alex: My friends tell me that, if I was talking, I am not able to utter words, but I can explain using body language. So what I do, if I am standing up I slowly sit. If I am with someone who understands me, I go to them and hold their hand, then they know how to help me lay down, and protect my possessions.
KAWE: Do you know what happens when you are having a seizure?
Alex: No. No one wants to talk bout it. I imagine it must be unpleasant. My mother is a religious woman and she will just say we trust in God. But I think I would like to know. When I get up, I have a bad taste in my mouth and must brush otherwise I keep spitting. Other times I bite my tongue.
KAWE: Has anybody ever tried to put anything in your mouth, to prevent you from biting your tongue?
KAWE: That’s good. Let’s talk about work now. Have you had problems getting work because of your condition? Also do you tell people you have epilepsy?
Alex: I am very open. Kifafa haina siri (epilepsy has no secrets). In fact, that is the first thing I explain to my employer and colleagues, because a seizure can come anytime. My current boss, the lady that brought you in, she knows and she is the one I approach when I feel I am about to have a seizure.
KAWE: What challenges do you face as someone living with epilepsy.
Alex: Let me tell you a story. One time, I got a seizure in town, near Kenya National Archives. I was heading towards Serena Hotel to see my brother. The seizure didn’t last very long. When I got up someone offered me soda and bread. I started to walk and by the time I got my bearing, I was in Machakos Country Bus Station. I just sat down. But then I got up and started to walk back towards Serena.
KAWE: Sorry, that must have been a long day.
Alex: I was very tired. I think, after a seizure, one needs time to recover and get their mind together. The seizure needs to run its course. Also, when people give me something to drink immediately after, I must thrown up. Another time my twin brother and I were walking towards town, near City Park when I got a seizure.
When I got up, I told him to leave me at the park. I slept for two hours in the sun. It felt good, the sun felt good on my body. When I got up from that sleep I was fine. So rest is important after a seizure.
KAWE: That is a challenge. Any other challenges you have faced?
Alex: Medication is very expensive. I remember one time going to a chemist and asking them to please just sell me one tablet, but they refused. They said I needed a prescription. My drugs were finished and I didn’t have cash. I just wanted a tablet for that time so as not to miss my dose.
KAWE: True, it’s a challenge getting affordable Epilepsy Medicine and KAWE has various program to address this deficiency but resources are a constraint.
Alex: There is also someone that came to ask me my story when they saw my comment on the KAWE page, I don’t think they know about you. I shall mention to them.
KAWE: Thank you very much Alex. Now, do you have any advise for people living with epilepsy as we work towards putting epilepsy in the picture?
Alex: Just a few things:
- Stick to medication
- Visit a clinic
- Avoid risky situations like riding on a motorbike unaccompanied
- Avoid walking at night
- Keep away from fire
They are not rules, but they work for me.
KAWE: Thank you. How about in a school environment?
Alex: What I could say, is there should be an exception for school kids who have epilepsy. Say a student has a seizure during an exam. Such a student should be allowed to postpone their exam. If they sat for that exam on the same day, they will struggle, not because they are stupid but because a seizure really takes out much from you and you need recovery time.
KAWE: Thank you Alex for sharing your story. We wish you all the best.