Two months ago, I made two very important decisions:
1. To stop trying to “be normal” by denying my condition and not only accepting it, but most importantly encouraging others to use their voice too, whatever their story may be.
2. To face my fears by sharing my story with as many people as possible, in the hopes of contributing to the Narcolepsy community and advocating to anyone who will listen.
So I have to make some things clear, that I feel are fundamental to those reading.
This blog is first and foremost, my story, my experience, in growing up, discovering and living with this chronic illness. My main goal is to shed light on my personal reality and the impact it has had in defining every single area of my life.
When I decided to write this, I knew it would be an unbelievable challenge in so many ways. Aside from my own personal dilemmas, there were a number of possible implications. Narcolepsy is a highly complex condition and affects every individual differently. Every experience is distinct because it is so hinged on our circumstances, location, social standing, education etc...
How to give true justice to all its complexities in a way that people could understand?
It’s a hard feat to describe something people have never felt, let alone successfully foster an emotional connection to a world they have never known.
Narcolepsy isn’t a part of my life...it is my life.
In order for people to understand, they need to know the whole story.
We all fear being judged...and as much as I would love to say I'm the exception... I’m just as human as everyone else, plagued by the same inherent fears and doubts.
One of the best lessons I learned early on in life, is to just get on with it.
When I woke up today, my plan was to re-read the post I had completed one last time, just to ensure it was ready to go and then hit publish. But the more I read it, the more I realized it was all wrong.
It felt too clean. It didn't feel genuine. I don't want to write what sounds good but has no substance... I want to write what's real.
So I remembered a conversation I had with a friend the other day... she told me something that stuck with me:
“When you read about or hear someone that inspires you, you don’t want just the inspirational, technical and “pretty” words...you want the hard truth...the ups and downs...the more personal it is, the more it touches people.”
She’s right.
Narcolepsy isn’t just one part of my life...it is my life.
So, for anyone to understand all the ways this condition can affect, disrupt, threaten, and impact every single aspect, of every single day of life... I need to give you the hard and raw truth.
Family plays a vital role in the early years of a child’s life, even more so when we are talking about conditions like mine.
An early diagnosis is key to a smoother transition to acceptance and adaptation. In the U.S. it is estimated that 1 in every 2,000 people suffer from Narcolepsy and over 50% of the people who have it, do not know they have it.
The first memory I associate with narcolepsy, was around the age of 14 (diagnosed 13 years later.)
I remember it vividly because it was such a frightening experience... and although I had no idea, it was an introduction into my new world, one plagued with sleep paralysis and hypnagogic hallucinations.
In London, we moved a fair amount of times, until we finally settled at a flat in an area called Stoke Newington. I couldn't complain...there were worse places in Hackney we could have ended up in, this one actually seemed relatively decent.
It was a small council estate, surrounded by flats all around, brown and dull... the usual London mood.
In my eyes, it was the place I felt most comfortable since moving to London in '97.
But the next few years in that house, the nightmares would begin, followed by frightening and disturbing experiences that would cause me to question myself in so many ways.
Around the same time, I began to experience brief moments of involuntary loss of control of my facial movements and sometimes weakness in my knees.
During one particular breaktime, I was standing with my friends in our usual corner of the playground in school, when someone said something ridiculously comical.
I felt my chest inflate with a foreign heat and rigidity that I could not comprehend...my body begged to release emotion I was trying to externalize...but all I could feel was the trembling of my cheeks as I now also fought to keep my eyes open.
The emotion that my body was forcefully imprisoning, was unbearably overwhelming.
My voice froze in my throat...my cheeks continued to tremble unnaturally...my lips now quivering slightly.
The feeling shot down suddenly to my knees, and it felt as though someone had knocked the back of them forcefully that I buckled slightly.
And then, as suddenly as it appeared, it vanished.
I blinked in effort to focus my eyes as quickly as possible.
With my heart clenched and now twisting in the pit of my stomach, I looked around as the laughter slowly died down around me... I was alone in my internal panic.
Eventually, I chose to brush this incident aside, I was probably just hungry...a body needs sustenance to hold itself upright, right?
But that incident would become a regular occurrence in my life...a trait I grew to consider to be my own.
Over the years, it suddenly wasn’t only provoked by laughter...it manifested with any strong emotion; sadness, fear, shock, surprise, anger...etc
I remained silent. I didn’t think it was important enough to share with anyone. It was just a trait of mine, and I sought comfort in the assumption that I probably wasn’t the only one, and that it really wasn’t significant enough to mention.
The next development was fatigue. No matter how much I slept, I never felt completely awake. At this time, it wasn't a case of daytime sleepiness. It was a heaviness in my body, my eyes that could sometimes last days in a row.
There were days I felt fine and even forgot about it entirely, ...but it was becoming increasingly difficult to wake up in the morning.
I took longer to get ready for college, so I was always late.
During classes, if I had a particularly monotone teacher, or a tedious subject, my mind felt as though it became engulfed in a foggy haze. Like I was dreaming, but while I was awake.
Sometimes I zoned out, my mind wandered into a distant world, making me jump as my friend dug her elbow into my side and looked at me disbelievingly.
Somehow, I got through college and made my way to University.
The daytime sleepiness became even harder to control.
But it still didn't phase me...in my head, it was completely natural to be tired all the time. I was so used to it by now anyway.
Late nights, tequila shots, hangovers more often than not...that's the Uni experience right?
Narcolepsy is not only invisible to others, even the people who experience its effects can be blind to them...unless you know of its existence and what to look for...you won't see it. The heaviest symptoms are invisible to the naked eye and the visible ones don't exactly scream illness to the world.
In 2013, I decided to join my two sisters in Angola where my life swerved in a truly unexpected direction and brought me to the place I am now.
Thank you all for reading!
Next post coming very soon...