a ghost stealing a battery from a tired looking person

What Narcolepsy Stole

My world is different from yours.

When I wake up in the morning, my first thoughts are never about what I’ll be doing that day, or rehashing some likely dramas responsible for keeping me up till late hours.

My first thoughts are focused entirely on putting all my energy into forcing my eyes to stay open and fighting my own body for refusing to acknowledge the 8 hours of sleep I had just had.

A prisoner in my own body

My mind disoriented, held hostage by the fog that for so long has made me a prisoner in my own body.

In moments like these, which unfortunately happen more often than not, I truly loathe this condition. It’s in these moments that I remember that I’m not “normal” and I confess that envy fills my heart.

What must it be like to never have to feel so powerless?

Passion for reading and writing

If you asked me what I wanted to be when I was younger, I wouldn’t have to think even for a second. I wanted to be a writer. This stemmed from the immense passion I had for reading.

Moving to England when I was 7 years old was particularly challenging, as the only language I was familiar with was Portuguese.

At my first school, I was endlessly teased when I tried to speak or spelt something incorrectly and this spurred in me a hunger to learn as much as I could of the English language. Pretty soon, I surpassed even the best in the class and began reading over 5 books a week.

Why couldn't I finish a book anymore?

My real commitment to writing, however, came when a teacher introduced a new book to our classroom’s “storytime” sessions and J.K. Rowling entered my life. I was in awe of her ability to create an entire world with so much imagination; a world that will, most likely, outlive the author herself.

At the age of 21, I couldn’t understand why I suddenly could no longer finish reading a single book all the way to the end.

In those moments that I would feel the smallest surge of energy coming through me, I would run to grab a book, only to awaken a short while later with no memory of anything I had just read.

I stopped dreaming so much after that.

My diagnosis confirmed my suspicion

The day I was given my diagnosis was no doubt one I won’t soon forget, but not for the reason you would probably think.

Going into the clinic, there was not a doubt in my mind that I had narcolepsy since I had discovered this for myself the day I went looking for answers online. I simply needed a doctor to confirm my suspicion.

There was no shock or confusion for me. On the contrary, I was absolutely ecstatic to get my diagnosis! Why?

Because I had no idea how much it would change my life.

Narcolepsy is a thief

In my eyes, I was leaving that doctor’s office with the medication that would be the solution to all my problems. I had absolutely no idea that it would rob me of doing the things I loved the most.

For me, in my own personal experience, narcolepsy has robbed me of my control, my focus, and most especially my capability to enjoy picking up books or a pen.

Choosing the path of acceptance

It’s taken a while to understand that I needed to stop fighting my condition and begin the trying path to acceptance and understanding.

If there is one important thing that I have learned from this, it’s that you can’t listen to the voice inside you that tells you that something is impossible, because it is possible.

For me, although narcolepsy has certainly meant that I can’t do a lot of things like I used to, I also have the choice to view it as not meaning that I can’t adapt my manner of doing them.

Have you been diagnosed with narcolepsy? Do you think about what narcolepsy stole? How do you think about the road ahead? Tell us more in the comments below.

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