“The greatest mistake you can make in life is to be continually fearing you will make one.”― Elbert Hubbard
It never crossed my mind that I would leave Angola when I did, and certainly not in the way I did. I had no plans of departing anytime soon. I was comfortable in my life there.
I was living in a cosy 2-bedroom apartment, had a job with an above-average salary, a company car, all the sun you could ever wish for, friends. Who would give all of this up from one day to the next?
But I have learned that in life, you can make all the plans in the world, but if it is not what life has planned for you, it will find a way to take you where you need to be, whether you like it or not.
Looking back now, I'm genuinely grateful for all the events that occurred which led to me to where I am today.
Because moving to Portugal placed me on a journey that I had never expected to embark on.
But I'm getting ahead of myself.
Let me take you back to October 2019...
When your life changes unexpectedly, for a while, it feels as though you're living in a dream, just floating through the motions in a haze, it does not feel real.
This is how I felt when I arrived in Portugal last year.
Suddenly, I found myself at 30 years old, right back to where I started; living at my mother's house, unemployed, houseless, carless and worst of all...friendless.
The natural reaction would have been to feel upset or sad, but not me, I simply got on with it. This is probably one of the things I most love, and hate about myself.
You see, being practical in itself is a good quality to have, but it requires a certain level of balance to be considered a positive trait.
Balance is something I struggle with very much.
I've been told I'm quite a radical person.
I either love or I hate. I hardly ever have a middle ground.
I'm working on it.
But as for this particular moment in my life, I cannot place all the blame on my practicality.
You see, if there is one thing I cannot stand, it's hearing someone lamenting about their lives, yet refuting all efforts offered that will enable them to resolve their problems.
This is why I prefer to resolve my issues silently. I don't want to be that person. I despise pity. I dislike revealing my weaknesses. And I particularly abhor stewing in my misfortunes.
The funny thing is when you are someone who rarely complains, asks for help, or cries...people think that you have no problems.
That, or they see you as someone so strong that they don't need to worry about because you can probably handle anything and you probably don't even suffer as much as they do...
I don't know if this has also played a part in enabling me to keep my narcolepsy hidden so long.
I'm not sure.
But like I've said before, no one ever knows what goes on inside someone's head, and what they do when you're not there to see it.
The first 3 months in Portugal were harder than I imagined they would be.
I returned to my survival mode of "switching off" and went about doing what had to be done.
I got a job, despite being advised not to, and returned to working in an area that I knew well and didn't require much of me; the retail industry.
I've always loved working with people, working in an atmosphere where every day is different and no client is the same. Plus, it was an easy job that didn't demand much of my time and took me away from the house and ultimately, from the thoughts I was desperately trying to avoid.
I was still taking my medication but trying to reduce my intake. It was not working.
So around December, I decided to quit cold turkey. I informed my doctor that I no longer wanted to take the Ritalin.
And this is when I truly realised that it is a drug like any other. The harsh withdrawal symptoms I encountered felt as though I was withdrawing from a class A drug.
My emotions were all over the place. I was angry for a long time. I felt alone and isolated and as if my life was being completely controlled by my narcolepsy. I felt powerless to do anything about it and hopeless in regards to my future.
I don't believe I was experiencing a bout of depression...but I can't say for sure either.
For the first time in my life, I was introduced to world of anxiety. I don't think I quite knew the meaning of the word before then.
Imagine walking around for 3 months, with a tightness in your chest that feels as though it's cutting off your breath? Your stomach feels like it would feel after a heavy night of drinking, wrangled and at times, slightly nauseous. There is a deep, disconcerting heaviness in your chest as if something really bad is going to happen...and you have no idea what it is and how to stop it.
Sometimes, I would lay in bed, my heart racing unbelievably fast...and all I could do was force myself to breathe slowly and deeply, in order to calm myself down.
How to stop this?
I still have no idea. I guess slowly, these feelings began to subside, day by day...until I no longer felt them anymore.
But like any addiction, you never totally get over it. It's always going to be with you. There were moments of weakness where I still thought about going back...taking it for just one month...but I had to accept the truth.
As a smoker who has tried to quit many times before, I knew that it was never just one cigarette...
I tried to block out my memories of Angola completely. It hurt too much to think about. I couldn't even listen to Angolan music, one of my favourite things to do. I avoided talking to my friends.
I was simply taking one step after another...never looking back at what was now my past.
New year's eve.
I danced the entire night with my cousins and some friends. For the first time since arriving, I was having fun.
The upstairs part of the nightclub eventually closed, and they directed us to continue our night in the downstairs part.
As we made our way, I began to hear a familiar song. An Angolan song.
By the end of the night, I found myself crying hysterically inside an Uber. Luckily, the driver was a woman, and she respectfully pretended as if she couldn't hear my choked sobs in the back of the car. These days, I find it an incredibly amusing scene every time I look back on it. It plays in my head almost like a movie, so incredibly dramatic.
But the truth is, at that moment, I finally allowed myself to feel everything. All the pain I'd been hanging onto since the moment I got on that aeroplane...and my heart ached thinking about just how much I missed my life.
Sometimes, life can't move on until you let yourself feel the pain.
There is no healing through avoidance. Letting yourself feel the pain is the first step in overcoming it.
After that day, things eventually began to get less painful. Not painless in any way, but slightly more bearable.
I began researching about Narcolepsy. I felt that I needed to see if there were other people out there like me and what their stories were like. It comforted me in a way so that I didn't feel so alone.
I joined Facebook groups, I found hundreds of websites and articles that offered support and information on how to deal with your symptoms and how to connect with other people with narcolepsy.
For the first time in my life, I created a Twitter account, in order to be able to connect with more people in this community and follow their journeys.
It introduced me to Project Sleep, a non-profit organization dedicated to raising awareness about sleep health and sleep disorders, founded by Julie Flygare, an internationally recognized patient-perspective leader, an accomplished advocate, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy.
I became obsessed with their initiative and began watching their Live videos on Facebook which invited different speakers every week to share their stories on their experience with narcolepsy.
I listened to each story and was astounded by how similar they were to mine and felt truly inspired by the courage they had have to be able to display their struggles so openly for the whole world to see.
Julie Flygare was in every single Live, introducing the speakers and conducting a small interview at the end. Every single week, she would ask us, the viewers, to state our name and say where we were watching from, and every single week I would reply with the same, "Hi, Iris from Portugal here!"
Being the only person from Portugal, I undoubtedly stood out.
Julie became my inspiration. She seemed so accomplished and humble, yet showed genuine care and interest in each and every single person she spoke to.
That's when I decided that I needed to share my story. It was time for me to accept the fate that I had been given instead of fighting it, I needed to use it to educate and help other people.
I had to turn change my own views of Narcolepsy, and turn what I had always viewed as a burden, into a positive contribution to society.
Whenever we create something, we want it to be seen. We long for it to be heard.
It's the truth, whether we admit it to ourselves or not.
From a delicate work of art...to a trivial Instagram post...it all matters.
It's an affliction of humanity we cannot evade (particularly in the age of the selfie).
When I decided to start this blog I knew I would have to share some personal aspects of my life and this made me feel extremely uncomfortable, especially since I value my privacy very much.
But it's in doing the things we most fear, that we will grow. There is no way you can grow if you continue to live in your safety zone.
For a while now, I have been doing my best to do things that I am scared of because I don't want to look back on my life and feel disappointed.
My biggest fear is to look back and regret all the things I didn't do.
The funny thing about life is that we have no idea how one tiny little action can have an enormous ripple effect.
After publishing this blog, for reasons that still boggle my mind to this day, I decided to send Julie a message on Twitter.
Yes, I decided to message the President and CEO of a large and successful organization.
I can't tell you exactly what possessed me to do it...but I just thought, what was the worst that could happen? Worst case scenario, I would be ignored or receive a no...and move on.
I sent her a link to my blog and asked her if she could take a look, explaining about my ambition to become an advocate for narcolepsy.
To my surprise, she responded.
And shockingly, she not only saw my blog but also invited me to participate in this year's Rising Voices of Narcolepsy Writing Program. I could not believe what was happening, especially considering that admissions were already closed and the CEO of the company was making an exception for me.
The Program aims to improve public understanding of narcolepsy, training people with narcolepsy to share their stories through writing with local communities, healthcare providers, news outlets, blogs and beyond. It seeks to combine the power of real-life stories with expert communication strategies, to effectively raise awareness and reduce stigma for all those facing narcolepsy.
Needless to say, I was, and continue to be, unbelievably grateful and humbled by her kindness and capability to offer a stranger this amazing opportunity.
So as I said at the beginning of this post:
You can make all the plans in the world...but if that is not what life has planned for you...it'll find a way to take you where you need to be.
All you need to do is listen to what life is whispering to you...even if at the time, it makes absolutely no sense at all...
Thank you all who continue to follow my journey, and for having the patience to await this post which took longer than I anticipated.
Sincerely grateful always,
Iris
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