I just shut my eye: My battle with sleep that do not end

Derick Wafula, 24, is living with narcolepsy - a condition characterised by an extreme tendency to fall asleep. It has been tough but he hasn't let the condition put a snooze on his dreams.

My name is Derick Wafula, I am a student at the Kenya Institute of Mass Communication. Fortunately, my lecturers, desk mate and classmates know about my condition.

I found out I had narcolepsy when I was 16 years old. I was in Form Two then and I used to fall asleep so much often during the day. Even when I was walking, I would feel sleepy and it was something that I could not control. I was not feeling sleepy because of fatigue: the uncontrollable shut-eye would just come.

I was confused. I did not know that it was a medical condition. At some point I thought I had been bewitched.

When I went home for the holidays, my parents noticed my irregular and abnormal bouts of heavy eyes. Plus, my grades had also dropped. They thought I was becoming lazy.

One lunch time, I fell asleep on the dining table while eating. That is when my parents realised that there was more to my drowsiness than met the eye. They took me to a general practitioner who carried out a raft of tests.  

When these tests did not yield any result, we consulted a neurologist. An MRI scan revealed that I had abnormal sleep patterns, and the neurologist diagnosed me with narcolepsy. This is when I heard about this condition.

Narcolepsy is a lifelong condition. I was put on medication to manage it, which helped. But the drug had two downsides; it is pricey and has debilitating side effects. I know of a person with narcolepsy who developed problems with his speech after taking this drug for several years.

I transferred to another school because of the condition. The teachers at my previous school thought I was doing drugs. Others thought I was lazy. Even in my new school I was misunderstood, but in the end they understood and treated me right.  

When I cleared high school, I was advised – for future health purposes – to ditch the medication I was taking. I stopped. I now manage this disorder through naturopathy. As Sir William Osler once said, “patients should have rest, food, fresh air and exercise”.  

I do not know if it is true, but I have noticed that narcolepsy strikes people who have great academic potential. Most of the people I have met who have narcolepsy used to perform well in school, before their grades started falling.

Strange things have happened to me because of this disorder. I have lost phones in matatus. What happens is, I only realise I was asleep when I wake up … that is when I also realise that I do not have my phone. On several occasions, I have missed my bus stop because I was asleep. There also have been times when I am having a conversation with someone, and then I fell asleep and I mumble things that do not make sense.

There is comfort in numbers. Through Narcolepsy Awareness Kenya, which does awareness on this disorder, I realised that I am not alone. I have met other people who are living with narcolepsy. This organisation has given coping skills and taught me how to be strong and positive. 

Narcolepsy still casts a shadow on my social life. Some people think I cannot be depended upon. Others laugh at me. And then there are people who give me nicknames. And do not get me started on dating … you know how girls can be?

However, through knowledge and support from family and friends, I live a normal life. I do not have self-esteem issues. I am creative and a budding music producer. I appreciate myself. This disorder has not hit the snooze button on my dreams.