Living with Narcolepsy

Let start by saying, I was not brought up in an emotionally expressive environment, thus when the Narcolepsy symptoms started, I did not know how to express myself, leave alone doctors’ misdiagnosis and assumptions made it worse. High school life was not easy since the symptoms started immediately after I joined. However, extracurricular activities made my life in high school less miserable, I always look forward to them. Notably, Wildlife Club, Kenya Young Christians Students (YCS), and Guidance & Counselling Club.

Fast Forward Joining the Dots

We always say things happen for a reason, I believe that by being actively involved with our Parishes Youth Programs, God was preparing me towards the journey of self-acceptance with Narcolepsy looking back now. Here is why;

Being a member of YCS made me become an active youth member at my Church (Our Lady of Visitation, Makadara) and also back at school(Huruma Girls’ High School, Nairobi) since our school was under the Church Parish I was able to juggle between the two. As instructed during the Peer Education Training everything I learned, I was to educate others back at school.

The training revolved around Life Choices, Life Skills, Peer Pressure, Abstinence from sex & drugs, HIV/AIDS, Teenage Pregnancies… etc. Little did I know the same skills will impact my life up to now. It was the lesson in Self-Esteem that would later make me assertive of my condition and push forward no matter what the doctors, teachers & classmates would assume about my sleepy nature.

Life-Changing Advice given by Fr. G (Father Glenford Lowe, SDB)

It was during a 2006 Youth Camp held in Embu, Kenya, organized by the Salesians of Don Bosco, SDB, called Forming Leaders, Building Generations Leadership Camp that Fr. Glen or as we referred to him Fr. G caught me dozing off, (actually now I know it was Micro-sleep, I was not diagnosed then) He actually asked me to mention what he has just said prior catching sleeping and I did word for word. He also asked me a question in reference to the topic he was teaching, I did, without stuttering. So he did not tell me to go out of the class, as he always had others do. Actually Fr. G was a respected and know non-sense priest most of us feared him, I don’t remember why what I remember is I was sitting at the front of his class thinking that me fearing him will help me stay awake during his session, but it did not happen, he caught me red-handed.

So after the session, I knew I had to go pardon myself to him. I followed him and when he was free to talk to me I actually showed him my jotter book. I actually told him

“I know you caught me dosing even if I was able to answer all the questions you asked me. Here, look,- as I tried to convenience him, Look at my book, I always fall asleep, I don’t know why but I always realize I was a sleep when I wake up. Even back school as you can see I fall asleep in the middle of taking my notes, I fall asleep, here look at my notes, I can sincerely tell you here I was sleeping here and here and here”

I told him while I continued turning the pages trying to convince him. Do you know what he told me, have never forgotten up to this day. 

It doesn’t matter if I believe you or not, God knows our inner most intentions and if I am not deceiving him then he understands my predicaments. He assured me if man (people) and doctors do not know why I always randomly fall asleep and I’m not making up the story, then God knows why and I should place my trust and faith in Him. All will be okay in due time.

All I know is I was never chased out of his sessions and what he said about God knowing my intentions and also knows why I fall asleep made more sense then than never before and I felt less guilty.  Until I got diagnosed 31/2 years later after that moment. Those words have always carried weight inside me.

The Peer Education Skills acquired throughout high school thanks to Don Bosco Youth Educational Services and Youth Alive Africa Kenya (under the Franciscans)

Take away notes

As my mother always told me, before and after being diagnosed with Narcolepsy. God knows everything the seen and the unseen. I should trust in Him to keep me safe and I should never give up or limit myself because in life there are no guarantees, trust, believe and walk by faith and not by sight.

God has control over everything and through Him, His will, and Purpose for us we can achieve anything we set our mind to. We also have to remember God helps those who help themselves, so sitting back and holding a pity party doesn’t help. We need to push ourselves to the limit and God will do the rest. Don’t let side talks and other peoples judgemental get the better of you. I know we are not immune to pain or rage, however being stressed also is a trigger to heavy sleep and a series of cataplexy attacks, so don’t stay angry for long, hold on to the past, the negative energy has also moved and the emitter is somewhere having fun. Inhale, exhale, and Good vibes only.

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