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"Life in Flashes" Explained
I struggle to look back on my past. To remember the girl I used to be. A practical stranger, who looked at the future and felt butterflies in her stomach. Someone who felt excitement and wonder at everything that awaited her. She was a girl who couldn't wait for the future. Looking back now, at that child filled with hopes and dreams, this feeling of sadness washes over me. I look at her and can only describe what I feel as sorrow as I now hold the knowledge of the life that awaits her. I truly don't intend for this to be a monologue lamenting my life. I'm extremely grateful for everything that I have accomplished, the amazing moments I have lived, the friendships I have formed all over the world and the incredible journeys I have been blessed to experience. However, there is a part of me that wishes I could go back and be that girl who thought the world was at her feet and anything was possible. The hardest part to accept is when I travel back through my memories and watch as her dreams are slowly shattered, knowing I possess absolutely no power to change the adversities that await her. The funny thing is that it's probably harder to relive it than it was to actually live it. Because I now have a bird's eyes view of every decision, every action and reaction that caused her to become this. To become me. For the past year, I have been advocating for people with narcolepsy and anyone else who needs the support of someone with a louder voice to break through the noise. I can be that voice. I want to be that voice. I will be truthful with you though, this journey is not an easy one. There are sacrifices involved that most people don't see. Maybe it's just me. Maybe I take it too seriously. I can't really answer that, to be honest. But if I can no longer be my own hero, maybe I can be someone else's. One of my biggest fascinations has always been listening to people's stories. I truly value listening to what someone else has lived, experienced, and learned in their own personal journeys. It's as though for that moment, I can completely step outside myself and appreciate the struggles that someone else has endured. It's a humbling experience. Throughout this year, I have told my story more times than I can count, to the point that I can't even hear it myself any longer. I prefer to listen. But there is one important element of this entire endeavour that I have not yet disclosed, and that I feel is an important part of this story I have been sharing with you, and that is the inspiration for this blog's title, "Life in Flashes". Let us rewind to October 2019. I have been working between 10 to 12 hours a day for almost 3 months. I've been sleeping no more than 5 hours each day. I eat breakfast and fail to remember to eat again only at the end of each day. It's 2 am on October 15th 2019, and I'm catching up on an endless stack of paperwork that I wasn't able to attend to throughout the day. Suddenly, a flash of something catches my eye, and I sit there staring into the air for a long minute wondering what it was that I had failed to see. Getting back to my work, there it goes again, and I think to myself that it was probably just a mosquito...however it is strange as I am usually the first person to feel whenever there is a mosquito in the room. I pay no mind and get back to the task at hand. A while later, my vision is losing clarity and I feel as though I can see various little specks flashing before my eyes. I blink and they vanish. I look away and they reappear. I felt slightly itchy all of a sudden, but again I pushed the feeling aside. I'm beginning to blink more than usual, a familiar sign that the tiredness I evade all day, is threatening to finally overpower me. Against my will, it triumphs and in a flash, I'm waking up with my head on the "oh-so-important" papers I had meant to finish that night. The rest of the day, it feels as though every time I blink, I lose minutes of my life, having absolutely no memory of how I got from one place to the next. And so "Life in Flashes" was born. The "flashes" I was seeing, that I thought were mosquitos, were actually the beginning of a very dangerous decline. The next 4 days consisted of a string of hallucinations of believing that my apart apartment was infested with insects. Four days of feeling bugs crawling all over my body, incessant scratching and uncompromising paranoia. If you have never had the displeasure of experiencing a hallucination, then I will describe to you what it feels like. You probably know what it feels like when you sense a foreign entity making its way, slowly up your arm. Every prick of its 4 legs (or more) legs, involuntarily marking their trajectory one at a time. Imagine this feeling and multiply it by one hundred. There's one on your arm, one on your leg, another reaching the extremities of your lower back and quickly joined by another and another. And no matter how much you struggle, twist, contort and wrestle, it's pointless. Can you picture this for the next 96 hours of your life? And even when it stops, the remnants of this trauma will trigger your paranoia for the next 2 months. Your brain will continue to send signals to your body as though they were still present. And once you finally understand that none of it was real, even though it felt so frighteningly so, you will never again be able to trust anything that your body shows or tells you. The mind is undoubtedly a fascinating organ. The power it holds to construct and deconstruct the world around you is extraordinary. This is why, when I look back at my younger self, knowing that this is the life that awaits her, seek to understand my sorrow...for this is not the life she envisioned.
The Staircase Effect
Imagine you're standing at the bottom of this staircase...looking up. You need to get to the top. You may not even know why...but feel something inside you telling you that you have to, that there's a reason why you are here right now and getting to the top is your mission in life. It's a long, winding way up with an elusive end and the longer you stand there looking, the more daunting the task seems. What would go through your mind as you take the first step? Would you begin counting each step, one by one? Or would you just avoid thinking about the steps at all, concentrated only on completing the objective before you? As you take your first steps you feel good, you feel hopeful. You're doing it. But just as quickly as this hope arises, as you continue your climb, a whisper begins to manifest itself inside your head. "...give up..." "...you'll never make it..." "...you can't do this…" We all have this voice inside us. The longer you let it speak...the louder it gets. Everyone has things they want to achieve, places they want to go and a sense of accomplishment they want to obtain. We all want to feel as though we lived the best life we can live. ... And yet, most of us fail to do so. Why? That little voice in our heads. It's as though we place these large barriers in our own path, and tell ourselves that that's as far as we can go. But why do some listen to this little voice while some of us can ignore it until it's a mere murmur in the wind? We ignore it so that we can override it. Although most people have an intensely ingrained belief in their head that successful people have something that makes them different from the rest of us, that isn't entirely true. "They didn't have special talents, they practised a skill until it was mastered. They didn't have easier lives, they simply didn't allow their problems to become excuses. They weren't just born with a success gene, they trained their mindset to not see failure as an option." Everyone could have an excuse as to why they do not succeed (or even try in some cases). The usual are they have a 9 to 5 job and don't have time, they have kids and don't have time or energy, they have bills to pay. Or it's just the wrong time in their lives and they are focused on something else and just can't have anything else going on right now. Or they are too young...or too old. They have a condition that no one understands (yes, I said it). And this brings me back to my main point, we all have things that could (if we allow them) prevent us from becoming everything we dream of, or having everything we wish we had. But there is one thing I have learned in life. People are happy being wherever they are...because if they weren't, they wouldn't be there. And the worst element of this tale is that society places so much pressure on showing people that you are doing, or will be doing, so much better than everyone else. But this may not even be close to the truth and deep inside, most people know this. Everyone is different, and everyone wants different things out of life. I don't think there is anything wrong with being happy where you are, with being comfortable with your life. Not everyone will be rich. Not everyone will be successful. Not everyone will be happy. "That is a fact of life, as certain as it is that none of us will come out of this life alive." In my opinion, the only negatives in this situation begin when people do not admit to themselves what it is that they truly want or even know themselves what it is. Let's be real, most of the population wants success and money. Evidently, it is normal for human beings to want the things they know will facilitate their lives. However, most people are not willing to put in the work that is required to be successful. Most people refuse to put in the investment that is required. And almost no one will even think of sacrificing a bit of their time spent watching TV to work on reaching their goals. And that's ok. But stop punishing yourself. Be honest with yourself. Narcolepsy could be my excuse. I have one of the best and most understandable justifications for most things in life. But I can't allow an incurable, chronic illness to determine my life. On the contrary, narcolepsy has helped me enter worlds and meet hundreds of individuals that I would have never known otherwise through my advocacy work. I truly believe that when you stop living life for yourself and start living for others, it becomes so much easier and you stop being driven by your own fears and limitations. I ask you all (those with and without narcolepsy)...ask yourselves what is the one thing that would make you race up those stairs, all the way to the top without thinking twice? And I mean a specific goal or dream you have, not something you wish to avoid. Hi guys, thank you so much for reading and I know this post was slightly different but I felt that this was a necessary one right now. I hope no one takes offence to what I have written, I know that narcolepsy is different for everyone and I strive to not judge anyone's story if I can help it. This was simply my point of view from my life experience, which is all I will ever know, unfortunately. Iris
Living with narcolepsy day-to-day is more than just tiredness. It's more than just hallucinations. It's more than insomnia, night terrors, fatigue, brain fog, automatic behaviour, loss of memory, cataplexy...I could go on, but I believe you understand my point. You see, the reality is that even as I write this down, I know that most people without narcolepsy will probably have that momentary fleeting thought cross their mind... "Ok, it does sound horrible...but it's not that bad really." Admit it...the thought has crossed your mind, has it not? Narcolepsy, whilst the majority of people will declare that it sounds absolutely terrible, and how do I live with it? In this very same breath, I can see in their eyes that they have absolutely no idea how severely it impacts us in every way, shape and form. You see, whilst most people will compare an invisible illness to a physical one, and proclaim that at least we can walk, talk...and even blend into society like no one's business...I find it unmitigatedly unfair when people decide to compare a neurological condition to a physical one. Why is it that people feel comfortable trying to "comfort" us by diminishing our struggle? Yet this would never happen with anything else. Would you compare a rape victim to a domestic violence one? Would you compare a blind person to a deaf person? Would you compare the tragedy of the Titanic to the tragedy of 9/11? There are some things in life which just are simply unable to be comparative by any means. What people don't comprehend (and I do not blame them of course) is that a neurological illness, is any condition that affects the brain, spinal cord or nervous system. And what does the brain do? The brain is an important organ that controls thought, memory, emotion, touch, motor skills, vision, breathing, temperature, hunger, and every process that regulates our body. So in reality, people that have a neurological condition, can (and do) suffer from physical ones every single day. Narcolepsy is frightfully much, much more than than a simple sleeping problem. It's turning on the oven to cook, only to wake up coughing to a smoke-filled room. It's being a woman and getting in a taxi at night, fearing for your life because you don't know whether or not you will fall asleep along the way and suddenly wake up in the middle of nowhere with a rapist. It's driving home at 12 pm in the afternoon after a good night's sleep and almost losing your life because you feel asleep at the wheel. It's waking up, whilst renting an Airbnb at 3 am in the morning, laying upside down on the carpet floor feeling your head screaming with a thundering headache. Feelings of being disorientated and thoroughly confused as to where you are and what happened. Only to discover that you somehow fell asleep sitting up on an extremely high bed, and must have toppled over on to the floor, leading to smacking your head on the wall and, incredibly, smashing your skull on the socket and breaking its plastic cover to pieces. It's making a cup of tea to warm up from the cold outside, only to remember that you have no milk, but then deciding to drink it black anyways. Sitting on the couch and beginning to laugh at something ever so slightly, and suddenly feeling your entire body involuntarily reacting to that emotion, causing your wrist to slack abruptly and not being able to do anything but watch as the mug tips over, spilling the boiling hot tea all over your lap. It's waking up (for once!) full of energy and excited to complete all your tasks and goals for the day, only to reach 9 pm and realizing that you were didn't cross a single item off that list. It's waiting for months to go to this one party, buying that new dress; spending money and hours on makeup. Feeling great and confident, only to find that suddenly your body feels as though you haven't slept in days and without warning, you find yourself fighting every tiny little muscle in your body...praying to just staying upright. It's holding your firstborn child in your arms and, in what is supposed to be the most blissful moment of your life, a single memory pops into your head. It's enough to send a shiver down your spine when you remember spilling that hot tea all over your lap...and you sit there wondering...if you possibly could ever drop your own baby? Need I go on? I think it's important to share these embarrassing but necessary incidents that happened to me and other friends of mine...so that you know that narcolepsy is so so so much more than simply falling asleep in inconvenient places. Thank you all once again for reading! I continue to be astounded by those of you who continue with me on this crazy journey! The next post I will be updating you guys on where my life is at right now as there are many things that will have changed! Will post soon! xxxxxxxxx
Saying Goodbye To An Inconceivable Year
The year 2020 was a particularly difficult year for the entire world. From the very beginning, catastrophe was immediately palpable from the horrifying bushfires in Australia, the flash floods in Indonesia, and of course, the COVID-19 epidemic that sequestered the globe for the entire year and even as I write this, its end remains to be seen. And of course, there were many, many other ordeals that I have not mentioned but affected lives all over. But what I wish to focus on in this post are the positive aspects that we can take away from even horrendously tragic events such as these. Because in every dark cloud, as we know, there is always a silver lining. I am writing this post on the 2nd day of 2021, and as I reflect back over last year with perspective, I feel a wave of admiration seep through me. For every single one of us. For every person that made it through the year in spite of the challenges, the hardships and for many people - the losses. I continue to be amazed by the resilience of humanity. I continue to be in awe of the strength, the determination, the courage, that people are capable of holding within themselves and yet most fail to recognize. Most of us will face our own version of hell on earth and yet it is easier to look at someone else's victories and commend them than it is to do this for ourselves, even when our own experiences could prove to have been just as arduous. We need to learn to celebrate ourselves just as much as we celebrate others. As for my experiences in 2020, I can honestly say that as difficult as its beginning was, most of my year provided extremely positive lessons and life-changing developments. I guess I'm one of the lucky few that can say that 2020 was more favourable than lamentable. I did, however, begin the year in possibly one of the worst positions I had ever found myself in all my 31 years of life. I was 30 at the time, forced to leave the country in which I had constructed a life for myself in six years, in an unexpected and traumatising matter of two days. This all due to critical complications with my chronic illness. I was dealing with atrocious withdrawal symptoms from a drug called Methylphenidate. I had no purpose in life and for the first time ever, not the faintest idea on how to even acquire the desire to care. I was in a dark hole that seemed to hold no light. Nothing gave me joy. Nothing settled my tightened heart. No matter what I did, I took no pleasure whatsoever. Looking back, I now realise I was slowly falling into what I can only describe, as a deep depression. And this is something I took a long time to admit. Most probably because I never allowed myself to feel even the slightest possibility of what I had determined to be "weakness", but in fact, was simply vulnerability. I now know being vulnerable is nothing to be ashamed of. But at the time, I was not yet in the right place of mind to accept this. I could see no end to the self-inflicted torture. But the beauty of life is that nothing lasts forever, and time heals absolutely everything. So, all in all, 2020 was actually a really good year for me. I think it's a very good exercise at the beginning of every year, to make a list of everything good that happened the previous year or things that you are grateful for, so here goes mine. 2020 was the year: I kicked an addiction that could have threatened my life. I pulled myself out of a quickly emerging depression. I finally accepted my narcolepsy and came out to the world. I became an advocate for the narcolepsy community. I let go of the resentment I had held onto for so long for my mum and dad. I became a member of the World Narcolepsy Day Committee. I met Julie Flygare, someone who changed my life. I began and completed the Rising Voices of Narcolepsy Writing Program. I started to finally workout consistently. I learned to forgive myself for so many things I blamed myself for. I said yes to a work opportunity that is changing my life. I started working with an amazing team in the USA and have met some of the greatest women who have quickly become invaluable friends. I discovered my "WHY"* and had the courage to share it with the world. I got back up time and time again, after every single time my narcolepsy tried to bring me down. So, guys, I could still go on, but I think that these are the major things that I am so grateful for in 2020. I strongly would like to recommend you make your own list, you may just surprise yourself! Lastly, I want to share my favourite quote ever. It is a quote by Jim Rohn that says, “Nothing can resist a human will that will stake its very existence on its purpose.” The day I first heard this quote, a lot of things were suddenly put into perspective for me. These words are words I carry with me every day and that give me the sense that anything truly, is possible as long as you do everything in your power to make it be so. So this is how I decided I am entering 2021, with more determination than ever and with an absolutely unwavering resolve to make this year an exceptional one. Thank you all who are following me into this year and continue to support this somewhat undisciplined blog. I appreciate every single person who takes the time to read this as time is the most valuable resource anyone can give. I wish you all an incredible 2021! * Your “Why” comes from within you. It is a feeling that compels you to do the work you want to do even if it requires short-term sacrifice. ... Regardless of those sacrifices, you still feel driven to pursue the work you really want to do because it gives you meaning. You can't imagine doing anything else. (Source: Find Your Why | https://lifeskillsthatmatter.com/find-your-why/#:~:text=Your%20%E2%80%9CWhy%E2%80%9D%20comes%20from%20within,it%20requires%20short%2Dterm%20sacrifice.&text=Regardless%20of%20those%20sacrifices%2C%20you,t%20imagine%20doing%20anything%20else )
The Art of Loneliness
Everybody feels alone at some point in their lives, right? Let's be honest, most people probably feel alone more times than we even imagine. The funny thing is that we all feel as though we are alone in our feelings. We feel as though no one can understand. We sometimes even feel as though there is something wrong with us. Unfortunately, this is human. But what is it like when you feel alone in your circumstances, and in fact, you are? For a long time, this is how I felt. Living with a chronic, rare illness, not knowing anyone who feels what you feel every single day of your life, can be one of the loneliest places on earth. Because it's not just in your head. It is real. You are alone. No one does understand. Although you may even try, you will most likely fail in your mission to try and make people understand. No one can be in your skin. What you feel, you alone know, though you may try to explain, to describe, you will continue to be alone in your pain. Before my diagnosis, my world was confusing, lonely and unbearably exasperating. How could I explain my pain, when not even I understood it? Waking every morning, I wondered why I continued to feel as though there was a cloud of haze surrounding my mind, and I was floating instead of feeling refreshed. My muscles would feel heavy and (almost) painful as fought to put one foot in front of the other, making my way to the front door. As I walked into work, my first task would be to place my usual, fake smile on my face, as though everything was perfectly fine! When actuality, I could feel my eyelids becoming once again threateningly heavy with sleep. My mind close to swaying with dizziness as the fatigue began creeping in craftily. As I sat on my desk I greeted my colleague who sat directly in front of me and turned on my computer to begin the painful task of filtering through my overwhelming number of emails, almost immediately feeling the panic rising. I knew what would inevitably happen. The fear, however, was in the terrifyingly mysterious when. As I typed on my keypad, I began my daily routine, for the 1000th time trying to trick my brain. "You feel wide awake. You feel fine! Today you will not fall asleep!" But like most days, my stubborn brain refused to cooperate and fall into my trap. And so it began. Around 10 am, my gaze began to lose focus. I fixated on the screen, desperately struggling to hang on to my consciousness. The words on the computer started to lose all meaning. Although I knew I was no longer a functional being, my body pressed on, and I continued typing unwillingly. My brain no longer had any say in the matter. God knows how long I was out. Next thing I know, my eyes are open, focused. I'm conscious again. I look up seeing my colleague looking at me, suppressing laughter. "What?" I ask her, knowing perfectly well exactly what she had witnessed but too embarrassed to address it. "Nothing." She replies. And this is how the next four years of my life played out. Every day different, yet the same. Most people by now know the part of my story in which I speak about hiding my condition for years even post-diagnosis. I was ashamed. I felt embarrassed. I had this untrue idea that my illness made me weaker somehow, and I'd fought so hard all my life to be seen as strong. I wasn't going to let it change the perceptions I'd worked so hard to create. I have no idea if I was even successful, but I liked to think I was...if only a little. What most people don't know is that I cried for one hour the moment I clicked on the "enter" button - the command that shared my story to all those I hold dearest and even those that I don't. Being the control freak I am, I hardly ever let people get too close. I learned this very early on, and I usually only need to make a mistake once to keep its lesson within me forever. The few I have let in, I sometimes wish I hadn't if I'm truly honest. They have power over me. Controlling my emotions is something I considered to be one of my greatest strengths. It's something that not many can do of course, yet I sometimes find myself slightly reminiscent of that 15-year-old me, the romantic daydreamer who fantasized about meeting her prince. That girl has long died. In her place is a stronger, slightly colder woman that now devotes her life to speaking to people all over the world and shouting her story at the top of her lungs in the hopes of empowering others to do the same. Gone is the shy, insecure child who doubted whether she should even voice her opinion and more often than not, decided it was best to keep it to herself. In her place is a loud and confident woman who tries her best to follow her music, no matter how it sounds to others. I share this with you all because I hope it shows that chronic illness or not, even if it's not possible to understand, I hope we can at least try to accept ourselves as we are and those we love as they are. For better or worst. Everyone has their pain, hardships, traumas, tales, stories... You may even think you know their story, or at least who they are as a person, but I've learned this year that you seldom truly do. What matters is that we try. Whatever it may be that we need to try...let's try. I want to thank everyone who continues to follow my story and support me. Taking time out to simply read, means more than anything else you could give me. So thank you whoever you are!
Beneath the covers, tears rolled silently down the sides of my eyes. I could feel their path obstructed as they began forming a puddle inside my ears. My chin trembled with the force of my fear, my nose clogged and inflamed, beads of sweat formed over my temple as the temperature rose inside the cacoon I had voluntarily imprisoned myself in. Still, I made no move. I made no sound. Because I could still feel his eyes watching me from the corner. At 16 years old, I found myself lugging two heavy suitcases in each hand, struggling to roll them down the uneven pavement, tears stinging my eyes threatning to fall, but I refused to let myself be seen crying in public. I knew they were staring as I walked away, probably waiting for me to turn around at some point. But I never did. If I looked back now, I knew I would no longer be able to control my tears. If I looked back now, I knew that my already clenched heart would not survive a reawakening of the image of their tearful faces as I said goodbye. If I looked back now, I knew that it would only make it that much harder to leave. That was the day I learned to never look back. For the next year, I lived with my sister in Birmingham, the second-largest city of the United Kingdom and the heart of the West Midlands. It's remarkable the difference one year can make in your life. This was the year that I not only began to truly appreciate the hardships that awaited me when I eventually entered adulthood, but itwas a year that would actually bring me closer to my Angolan heritage. I was able to experience an entirely new manner of living and it surprised in an extremely positive way. In fact, it appealed to this foreign, underlying feeling that we describe as "saudade" in the Portuguese language. "Saudade" is a very powerful word in the Portuguese language. It is one simple word that evokes so many emotions. There is no actual word for in the English dictionary that is able to accommodate the true sentiment of this word. The best translation I have found described it in the following manner: "Saudade is a word for a sad state of intense longing for someone or something that is absent. Saudade comes from the Portuguese culture...described as a kind of melancholy yearning." - Source: (www.dictionary.com) And this is the exact feeling that was awakened in me for the first time in my life when I thought of Angola, a country I had left at the age of 3 and had absolutely no memory of. This was the year of many experiences, including my first time going to college and working my first job. My first time quitting a job (after only 1 month!). My first and only time, thankfully, starting and leaving 5 jobs in one year. I was only 16 and held no notion of responsibility. I did the most menial jobs you could think of. From working in a hotel to fundraising door-to-door, selling insurance on icy streets, and even selling burgers in the Aston Villa Football Stadium. I quit college after only 3 months. I received my first paycheck. I fell in love with opera. It was the first time I had true responsibility. It shaped my life and the person I would later become. I would not be who I am today had I remained in London. But the thing that has stuck with me above all to this day? It was the year I had my first real hallucination. At the time, I did not even consider that what I was experiencing was a hallucination brought on by narcolepsy symptoms. I truly believed that what I was encountering was a very real, very malignant entity. I remember the experience so vividly. Every single action that brought me to that moment. Every single step in the escalation of my fear. At the time, we shared an apartment with 3 other people. These were all friends of my sister and all over the age of 18. I was the only underage person there. The baby who couldn't party with the grown-ups. So one day, they organized a night-out together in Broad Street, the place where everything happened. Although I did feel slightly dismayed with being left behind on my own while they had fun without me, I tried to console myself with the fact that I was actually going to be fully alone at home for the first time ever. So I relaxed back on the couch with a large bowl of popcorn on my lap and settled in to watch my latest obsession at the time, the infamous Antonio Banderas movie, "Desperado." The night ran smoothly with no incident. I had never had any issues with being in my own company, and that night was no different. Even when all lights suddenly went out and I was left in pitch dark, I was not alarmed in any way. I picked up the phone and rang my sister. We spoke for a while as I explained the situation to her and asked for her advice on what I should in regards to the electricity. However, she quickly informed that there was nothing I could do. At the time, the building we lived in had a strange top-up system that did not work with a card or monthly billing. The only way to recharge was to insert one-pound coins in the machine that was located by the entrance of the small, two-floor building. As you can probably already guess, I had none on me, or anywhere in the house. Still, I remained calm and as we had a gas cooker at the time, made my way in the dark to boil some water and make myself a cup of tea before I resignated myself to bed, as there was nothing else to do at this time. I made my tea calmly and entirely unaware of the terrifying night that lay before me. As soon as my tea was ready, I picked up my large "I Love Tea" mug and began to make my way towards the bedroom, located on the other side of the apartment. From the moment I turned my back to the kitchen, I felt a cold shiver run from the base of my neck, all the way down my spine. I don't know if this has ever happened to you, but have you ever experienced someone standing right behind you so closely that you can physically feel the heat radiating off their body? And if they are standing even closer, you can literally feel their breath on your neck? That's exactly what I could feel in that very moment as I walked away from the kitchen and into the living room. I felt myself stiffen but my feet continue to carry me forward, one foot after the other, as though they instinctively knew of the urgency to carry me as far away from this foreign presence shadowing my steps. There's something about being in total darkness, and feeling something behind you, radiating dark and sinister energy that you know is aimed at no one else but you. I felt the smallest sense of relief as I reached my bedroom, ever-so-gently placing my tea on the bedside table and then hurriedly crawling into bed and fixing my covers over myself so that there was not a single point of entry beneath my head or shoulders. He had followed me in. Do not ask me how I knew it was a "he" or how I knew exactly where he had positioned himself in the room...I just felt it so strongly as if there was an actual physical being present in the far left corner by the door. Beneath my covers, tears rolled silently down the side of my eyes. I could feel their path obstructed as they began forming a puddle inside my ears. My chin trembled with the force of my fear, my nose clogged and inflamed, beads of sweat formed over my temple as the temperature rose inside the cacoon I had voluntarily imprisoned myself in. Still, I made no move. I made no sound. Because I could still feel his eyes watching me from the corner. He made no attempt to move or come closer, but I felt as though he was waiting. He was waiting for me to look at him. But I refused. No matter what, I would not look at him. I would not give him the satisfaction. Because I had no idea what would happen if I did, I just knew it wouldn't be good. I have no idea how long I lay there. How long our silent battle continued. How I managed to maintain my defiance. Because it seemed as though after a long while, he grew impatient. He inched closer. His unspoken threat, ringed loud and clear in my ears. You can't fight me for long. I can get to you either way. The closer he got, the more horror-stricken I became. At 16 years old, I had never encountered a "life-threatening" situation such as this one. I say "life-threatening" because at the time that's exactly how it felt. I thought I was going to die. And as most of us do in these situations, whether we believe or not, I began to pray to God. It was the only thing I could think of to do at the time. I felt absolutely powerless and alone. I had to feel as though there was a higher force who was much bigger than myself and this creature that had forced its presence into my life. To this day, I am not religious. Although I believe in a higher power, whether that be God or some other entity entirely, I do not believe in religion. I respect all those who do and have friends from all different backgrounds, but it's my own personal decision. However, all I know is, that on this particular night, my prayers were answered. And the dark creature evetually dissipated from my room and has never been back again. Although I have had other, just as frightening (if not more) encounters with the supposed "paranormal", which in reality is really just a conjuring of my brain's unique functioning...I can truthfully say that what I have designated as "the darkness" has never once returned. And for that, I am thankful. Whether it really was just a conjuring of my mind or a true manifestation of beings that are not within our understanding, I am grateful. I don't think I ever shared this with my sister at the time or anyone else for that matter. Firstly, I didn't want to scare my sister since she lived there too and I didn't want anyone else to think I was crazy. You see, as a 16-year-old who is still struggling with their own identity and doing everything to be accepted, living these extremely bizarre episodes is not really something that you want to share with the world. With anyone really. It's hard enough to deal with the normal adolescent pressures around you, that this is something you feel you have to face on your own. As I said in the beginning, this year away taught me many things. If I'm being honest, I feel that this particular experience taught me more than anything else that year. It was this moment that taught me to stand on my own two feet. It taught me to experience pain and keep it to myself. It taught me there are just some things that nobody else will ever understand and that "cross" is one you must bear alone. To this day, my friends still tease me about the way I left that sunny afternoon and tell me that they really were waiting for me to turn around and were shocked when I didn't. But I now understand that life was preparing me for the first of many goodbyes. In my entire lifetime, I have moved about 11 times (that I consider truly moving) and every single one of these times I have had to leave somethings and many someones behind. It doesn't get easier. But I will tell you that I have met some of the most amazing people in the world. I made more true friendships than I can count. And I was loved way more than I deserved. So I leave you with this: Embrace even the most terrifying moments of your life, because they are simply shaping you for some of the best. Guys I am honestly so sorry about the amount of time I have taken to post this time but in my defense(!) between moving countries (yes, again!), volunteering, looking for jobs, attendings weddings, house hunting....you get it right?? Pinky swear I will try to never take this long again! Thank you so much for bearing with me and continuing to follow my story!
Whispers of Life
“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
The Long Way Down
Out of everything I shared on this blog, I think this is the post I was dreading the most. Why? Well, although everything I have previously related is deeply personal to me, what I will reveal next is the part of my life that is hard to articulate, let alone display on the internet...for everyone to see. I am going to tell you things that could make you react in several ways. You could very likely judge me. You might misinterpret my actions. You may even genuinely question my sanity at some points. But I can guarantee that as you finish reading this post, you will feel a slight shock as you learn about the darkest moments of my life. But at the end of the day, only you can decide what lessons you will take from my story. After my diagnosis, I believed that things would change. I thought that it would resolve a great deal of the issues in my life. But that wasn't the case. There is one thing I learned almost immediately. A diagnosis isn't a cure. Life doesn't automatically transform. Problems don't disappear. If anything, it created entirely new problems...ones that I hadn't seen coming. My doctor informed of my treatment options, which in Portugal, weren't many. I could either choose to start with Modafinil or the only other remaining option, Ritalin. Being the born researcher that I am, I had already done my investigation and then discussed these with my sister, who warned me strongly against Ritalin. She stressed that she had seen many documentaries on the extremely negative side effects of this drug. So, of course, I chose Modafinil and began my treatment in Angola. For the first few months, I felt like a new person. I finally had a treatment that camouflaged my symptoms. It was incredible. I felt normal for the first time in my life. I began to feel invincible and then entitled...like I had every right to reject this "curse" that had ruled me for so long. I deserved to live a normal life. This fixation on "normalcy" became my lifeline. One I hung onto for dear life. Nothing and no one could make me believe any different. Furthermore, you should also know that people who suffer from Narcolepsy are generally, dependent on medication for the rest of their lives. A daily norm. The problem is that these pills are stimulants (promoting wakefulness) and its effects eventually subside. The body builds up tolerance and consequently, the effect begins to wear off. This was my case. After a few months, I sensed the drowsiness slowly reclaiming my body once more. I got in contact with my Doctor via email every three months to ask for a new medication, she then forwarded the prescription to my mum. After this, my mum had to go to the pharmacy to purchase them, and then find someone visiting Lisbon who would eventually fly back to Angola before it finally reached my hands. An extremely lengthy process as you can imagine. So with the newfound circumstances, I sought my doctor's opinion on how to resolve this problem. I shuddered at the mere thought of going back to my previous life. Her solution? Ritalin. With no other option, I conceded. The next year and a half would serve to prove my sister right. The side effects began almost instantly. They worked in phases, one after the other. They began with headaches, then insomnia, irritability, palpitations and loss of appetite. Although far from ideal, they were manageable. I lost most of the weight I had gained over the last few years, in a matter of weeks. The loss of appetite was the one constant side effect that never subsided. I could go an entire day without remembering to eat. My stomach sent no signals to my brain to indicate any hunger whatsoever. The palpitations, however, were the worst. My heart sometimes felt as it if it could burst out of my chest at the speed it raced. I began having bouts of anxiety and tightening in my chest that sometimes lasted for hours. At this time, I was also having serious problems in my relationship, which added additional stress on top of the symptoms I was already struggling to adapt to. The anxiety increased which only worsened my palpitations...I started to feel as if I was going crazy. As our issues escalated, I could no longer handle it and so I did the only thing that was within my control. I ended the relationship. Looking back, I believe this was a critical moment in my life, greatly responsible for throwing me into somewhat of a "disconnected" state. I did what I usually do in these situations, I shut off my emotions and proceeded to live in a flat out robotic manner. I felt nothing for a very long time. If you looked at me, you would probably think everything was fine. You would probably wonder how someone who had just ended a 5-year relationship could get over it so quickly... But I guess that's the funny thing about life. Ninety-nine per cent of the time, nobody has a clue about what is happening inside someone's mind and what they do when they're alone. Most people only ever see the "act" that is presented to them. Now, I am in no way trying to suggest that they hold any responsibility for that. We are all guilty of this. We, unfortunately, are not mind-readers. I'm simply stating a haunting fact of life. But I wasn't dealing with it at all. I was evading the emotions, avoiding the truth, and anything remotely real. I have this remarkable gift...I call it the "switch off" button. I can stop feeling whenever I choose. Unfortunately, however, I do not have possession of the "on" button. So I can turn it off...but I hold absolutely no control, or even knowledge, of when it will turn itself back on. This is the highly inconvenient part. But when it does, the feelings hit me like a ton of bricks, and every emotion I avoided, flood me with a ferocious force. My memory of those first months is vague, I only know that I threw myself into my job. I began working more and more as time went on. Eating less and less, sleeping less and less every day. By the end of that year, I had managed to make things even worst for myself. Eight months after my breakup, I reconciled with my ex, only to end it once again two months later. I was plagued with guilt for a very long time because I knew how much action affected him. My only defence is...I legitimately was not in the most stable frame of mind. You see, the truth is, I was starting to get seriously off course with my medication. I was increasing my intakes slowly every day. And the more the effects wore off, the more I took. The side effects escalated to an alarming level. I began to feel restless most days, I had to force-feed myself...food had no appeal whatsoever. My mood swings were now a constant, I could go from feeling on top of the world...to drowning in anguish...in a matter of minutes. To make matters worse, the job I used to love so much became my personal hell. I began having panic attacks at the mere thought of going to work. So, after much deliberation, and support from my family, I decided to quit. I made a deal with myself to take a break from the corporate world. I wanted to work for myself. I had a handful of clients who I knew would be more than happy to follow me and so I began to feel hopeful once again. Things were going to be ok. But yet again, fate had other plans in store for me. On my last day at that job, I got a call from another company. They invited me for an interview. They were practically pleading. I informed them that I wasn't looking for another job, but I also didn't see any harm in listening. It was only the professional thing to do, I thought. The proposal they presented me with was impossible to refuse. For the first time in my career, I would responsible for not only a team but an entire department. Not to mention earning nearly three times more than my previous salary. I accepted. A decision I would very quickly come to regret. Let's just say that it was the most overwhelming, overexerting, strenuous and mentally corroding occupation that I ever had the misfortune of doing. Adding to the fact that I was in a mentally weakened state already...my days were basically counted from the moment I stepped into the role. But I want to be clear on just how much this job demanded. I was sleeping at most four hours a day for three whole months. I woke up at 5 am every day and begrudgingly closed my eyes at 1 or 2 am. The only way I was able to do this for such an extended amount of time was thanks to the Ritalin. It's humanly impossible to stay on your feet for 3 months straight with no food, no sleep and working with Events. An area that demands energy, meeting impossible deadlines, and in my case...being able to be in three places at once to hopefully answer to the large number of clients we had, saddled with an extremely small team. My nights were now not only plagued with menacing nightmares...but my hallucinations began to truly unsettle me. Because they didn't feel like hallucinations. They felt as real as you and me. Working late most nights, I would feel a presence watching me, walking behind me...touching me. I had to put the TV on as loud as I could that time of night, with the most comedic programmes I could find, just so that I could cope with the sheer terror I felt. By the time my 30th birthday came around, I don't even know how to describe to you in words, the extent of my emotional and physical degradation. I was hardly functioning anymore. Some friends of mine insisted on throwing me a birthday party, being that it was such a significant date. I agreed as long as I had no part in it. I physically couldn't handle any more responsibilities. My birthday couldn't have fallen on a worse day. I hadn't slept at all in two days due to the number of crises that occurred that week at work. I hardly even remember my birthday. Most people put it down to alcohol naturally but in truth...I didn't even drink, I was actually "drunk on sleep" or technically speaking, painfully sleep deprived. Funnily enough, sleep deprivation looks a lot like being drunk; your eyes glaze over, your speech begins to slur, and you can barely hold yourself up. But even though it's a night I hardly remember, it's most certainly a birthday I will never forget. My final breaking point came the very next week. I was sitting at work that following Wednesday, stressed as usual, but feeling a bizarre itch. I felt it everywhere. Half the day went by and I hardly focused on this...I was overcome with more important problems to resolve. That is, until...I felt something on my arm. I looked down to find a very small, strange insect crawling on that very same spot. I jumped to my feet and frantically raced out of the office, ignoring everyone's concerned looks and repeated inquiries. Arriving at home, the scene was something that, to this day, I still can't make sense of it in my head. My house was infested. I have no idea what these insects were, or where they come from. All I know is...they were everywhere. I called a disinfestation company immediately and exited the house as soon as they had finished the job. My heart raced as I stood outside the building, feeling totally and utterly lost. A surge of emotions began to bubble up inside me...I felt like a volcano was preparing itself to erupt inside me. I got into my car and drove to my friends' house which was only 5 minutes away, and stood outside her door, feeling even more perplexed when she opened it and motioned me in. I broke down, still standing outside, as realization washed over me that I couldn't go inside. What if they were on my clothes? I couldn't infest her house too. But being the phenomenal friend that she is, brought me a change of clothes once I managed to explain, and forcibly ushered me into her house. To sum things up, not wanting to overextend this already prolonged post, the disinfestation was pointless. So I booked another. But going back to my house, I was charged with paranoia...I felt like I could still see things moving. I started to scatch again. I couldn't imagine sleeping in my bed or sitting on my couch, wearing my clothes, touching my books...I no longer felt comfortable in my own home. From then on, I stayed at my sister's house. I didn't go back to work. This was the most time we had spent together in a very long time, and it was during this time, that she had the chance to see the extent of my unmistakeable deterioration. Understandably, she became highly concerned. You may be shocked to hear that all of this, only brings us to Friday. My sister sat me down and began voicing her concerns. She expressed how much my behaviour was genuinely frightening her. She related how she'd noticed me slurring my words, spacing out, start talking about one thing and then radically, as if I'd forgotten what I was saying, continued talking about something else entirely unrelated. She said that sometimes...I even looked drugged. She then made a suggestion. She suggested that it might be time to start taking care of myself and that, under the circumstances, the best solution might be for me to move. Four days later, a single suitcase in hand...I boarded a plane to Portugal, leaving my entire life behind... I just wanted to apologize for this extremely long post, but it was impossible to cut out much of the information I felt was necessary. It is important to me, for people to understand the full impact a simple condition that is sometimes mocked, can have in a person's life. It's a compilation of elements that truly affect you, your decisions, your mental state, and ultimately your entire life. I hope this changes some of the views people may have regarding Narcolepsy and, most importantly, medications like Ritalin. But this isn't the end...there is still more to come...
I have a terrible memory. I can count in one hand the number of memories I have before the age of 13. The only reason I could actually tell you about it, is because I've always written in diaries. I'm glad, because at least there are some things that have been preserved, and I can always look back if I choose to. But there are a few memories that are sealed in my mind. These rare cases, they are moments that significantly marked or altered my life's course. One of those is October 6th 2013, taking the first tentative steps outside the airplane, and being hit with a blast of hot, sweltering, air...an atmosphere completely foreign to my senses. Change was nothing new to me...and I found it exhilarating. There's something so riveting about not knowing where life will take you next, who you will meet, what different experiences await you... I guess growing up in a constantly-changing lifestyle generates a certain compulsion for it. Angola is a unique country, with an even more unique culture. It's large country, situated in Southwestern Africa, a Portuguese colony that only gained its independence in 1975, yet wouldn't experience true autonomy until 2002, having been engaged in a civil war for 27 arduous years. It's a country that has so much beauty, wealth and enormous potential...but even more poverty, hardship and corruption. I'll be honest...it's not for everyone. A lot of my friends simply could never understand how I could possibly want to live with all the stories I told them. But there's something that really pulls you in...it's hard to explain. Luanda (the capital) is definitely not somewhere you will find much privacy, it's small and everyone knows everyone. Gossip is ingrained in the way of life. Expect nothing less. But at the same time, people are warm and inviting. It is one of the few places in the world today, where kids play with each other more than they play on their iPads. Respect for your elders is mandatory, and family is everything. It's a society filled with contradictions, that somehow will never fail in igniting a fierce nostalgia in all those who lived there. For some reason, my somewhat dormant symptoms, were instantly triggered the moment I arrived in Luanda. Maybe it was the intense heat, the stress of adapting to a new lifestyle, I can't be sure...but from the very first day I began working, I no longer controlled my body. I explored various companies in the 6 years I lived there, but unless you're lucky enough to get hired by a company that pays you a great salary and provides you with stability and growth, this is usually what happens. I think that to this day, my employers from my first and second job, honestly believed I was a lazy, unprofessional person and I know with certainty that most of the people in those companies laughed behind my back almost every day. I would fall asleep almost every day at my desk, at one time or another. I still feel very lucky in the sense that I was never fired because of this, and in most cases, I somehow had amazing colleagues that had my back and I could open up to. There were a number of ways that I would wake up; someone snapping their fingers at me, clapping their hands aggressively in front of my face, the sounds of snickering beside me...and the worst of them all...waking up by myself and realizing everyone was quietly working around me, knowing they all noticed...but no one dared address it. These were times I knew it would be spoken about in my absence. Then there were the times that I didn’t even remember falling asleep...all I knew was that suddenly minutes had passed on the clock...and I could not account for them. This began what would be, the most distressing and exasperating, subsequent three years of my life. A continuous and unabating cycle of incidents that only amplified my dread every time I sat down at my desk. I began fearing every morning I sat at my desk, every meeting we scheduled with clients, every scenario that required me to be still...began to trigger an intense feeling of anxiety inside me. After a while, my symptoms also began manifesting themselves outside of work. In parties, I would sometimes be caught sleeping right next to the tall speakers, blasting with music...it didn't deter me in any way. I could be sitting, standing...it made no difference. When my body decided to shut down, there was absolutely nothing I could do. My other symptoms started to become more prominent and frequent as well. The nights presented me with yet another affliction. I got my own place 9 months after I arrived, since to me, having my own space is sacred. I was no stranger to living by myself, I actually loved it. I'd never had any issues with this, but in the following years, I would suddenly wake up in the middle of the night with the sound of glass breaking. It was a window. Someone was trying to break in. My body froze with fear, and I was then imprisoned by an episode of sleep paralysis. But I would hear it so loud and clearly...the glass smashing on the floor, footsteps making their wait to my bedroom... A million thoughts would race through my mind...I'm going to be robbed...raped...maybe even killed... The shear terror I felt in those moments is impossible to describe. When I finally managed to free myself and get the strength to get up...I would sit in my bed, still as a statue, listening, waiting...and nothing...there was no sign that someone was in my house. Mustering the courage to check the windows...there was no broken glass...nobody was trying to break in. I really thought I was going crazy. Even more so, because this happened so many more times, and each time I still believed it was real. In those moments...it seems so real. Lack of a good night's sleep...did not help with my daytime issue. By 2017, I had gotten so used to my symptoms that every day, I mentally prepared myself and repeated my now habitual “pep-talk” in which I forced myself to believe that: today, I would be in control...today, I would not fall asleep...today, I would be focused and productive. I don’t really remember if this ever worked. But I tried. I thought it couldn't possibly get any worse...even my rebellious mind had to have its limits. I was wrong. So, it’s around 3pm just after lunch break, my new boss called me over to discuss my new clients…my heart dropped. Anything after lunch made me highly nervous, because these were the times where maintaining control over my body was unimaginably challenging. I remember sitting down, and although I probably appeared seemingly focused on his words, internally I was screaming at my body, begging it do what I said and behave just this one time… ...the next thing I remember, my boss was thanking me and informing me that I could go now. I hesitated, attempting to situate myself for a moment and understand what had just happened. I looked for signs of reprimand or annoyance on my boss’ face but I couldn’t see any. I made myself get up and walk back to my desk. I placed my notebook down, and there it was...an entire page filled with writing. The bottom half of the page was almost indecipherable...but it was my writing. And I didn’t remember writing a single word. Today, I recognize this as “Automatic Behaviour”, this happens when an individual with Narcolepsy performs an activity or task with little, to any, conscious awareness during these periods and later has almost no recollection of these moments. I didn’t stay very long at that company. Fast-forward to my next job...things were looking up, I would be working with someone who I had previously worked with in another company, someone who was aware of my “problem". It made things easier in some ways...harder in others. Easier because I was no longer fearful for my life every day, my new boss would just snap her fingers at me, bringing me back to earth and I would simply straighten up and get back to work. It was a welcome relief, for a while anyways. But in others...the pressure increasingly grew. This company was large and much more competitive than the others, they would not tolerate this sort of conduct, and my boss made this very clear on multiple occasions. Day by day, falling asleep once again became my nightmare. The stress began to cripple me. I felt that I couldn’t trust my own mind. I felt like a puppet being controlled by an external force. I didn’t know what was wrong with me...but I knew something was wrong. Around this time, there were 2 major incidents that contributed to my (unsurprising) breaking-point. On top of the work pressure, these events led me to finally surrendering, taking action and getting myself on the road to diagnosis. The first happened on a Tuesday afternoon, I picked up a friend during my break to go and get some lunch, around 12pm in the afternoon. The sun was shining as usual, and we were listening to music in the car and naturally fell into silence listening to this one particular song. That familiar sensation began to creep up...the one that only happens right before I shut down...it’s as if my mind slowly and involuntarily, becomes submerged into a dense, heated mist that wraps itself around my brain and cloaks it in darkness. As I continued driving, I remember my mind suddenly giving in to the darkness, no longer able to fight it, now pulling me into a catatonic-like state. I can still remember, however, the split second that my right hand slipped off the wheel. Luckily, my friend, who was sitting in the passenger seat looking out of the window, instantly called out my name once she began to feel the obvious swerve the car began to make. I instantly snapped out of my haze and put all my concentration on focusing on the road ahead. I could never let this happen again. I still thank God, that there were no other cars in the road in that moment. The second incident actually happened that very same week. I got home at 6pm and decided to cook something very quickly because my stomach was aching with hunger. I can’t remember exactly what I was cooking, but I remember I had to wait at least 15 or 20 minutes for it to cook. So, I decided to sit down quickly on the couch and flick through the channels to pass the time. The next thing I remember, my nose was filled with a distinct smell...it took a few seconds to process, but the smell was unmistakable...it smelled like burnt. Something was burning. I literally jumped to my feet and raced to the kitchen as soon as I managed to break free of the spell my brain had induced me into. The pot was just beginning to catch fire. I put it out before it grew any further, but my heart would continue to pound for the rest of the night. These two incidents shook me enough to take these symptoms extremely seriously. Your body is always speaking to you. If your body begins to act in a manner that is out of the ordinary...listen to it, because it’s trying to tell you something. From that day on, I was glued to my laptop, searching for answers on the internet...typing anything that popped up in my mind, hoping and praying that I would find something, anything to explain it all. I searched and searched for weeks...when finally one day, I read about a condition that seemed to address symptoms that seemed to really resonate with me; falling asleep involuntarily, hallucinations, nightmares, involuntary muscle control...it all fit.... ...It was called Narcolepsy. Thank you all so much for reading! Please let me know what you think in the comments box. Thank you!
Speaking Up, Speaking Out
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...
Understanding the Beginning and the Basics of Narcolepsy
It's hard to know where to begin my story, but I guess the best way to start is by providing you with some context on my background first. And then by beginning our journey into the realm of Narcolepsy, starting with first establishing what exactly is Narcolepsy and the symptoms that are associated with it. My story will pass through a few different locations, as I have been back and forth through 3 different countries throughout my life, as you can see below: > 1989 - Born in Lisbon, Portugal > 1989 - Luanda, Angola > 1995 - Lisbon > 1997 - London, UK > 2006 - Birmingham, UK > 2007 - London > 2009 - Wolverhampton, UK > 2012 - London
> 2013 - Luanda
> 2019 - Lisbon To briefly explain my heritage, I am Portuguese/Angolan but until I was 24 years old, I did not identify with either of these. For most of my life I was settled in the United Kingdom. I studied there, formed my life-long friendships, experienced the best and worst years of my teenage and young adult life...and naturally, fully embraced the culture I was immersed in, and didn't give much thought to my origins. Eventually, I will delve deeper into other aspects of my background that will provide further information and context, but that's for later... So, in 2017, I was diagnosed with Narcolepsy (Type 1) while living in Angola. However, I was not diagnosed there. Being that in Angola we did not have the medical tools required for this diagnosis, I was obligated to turn to Portugal (where my mum lives) where there are better medical conditions. Angola is a country on the Western coast of Southern Africa, still somewhat underdeveloped and taking its first steps into hopefully overcoming many of its problems and traumas of its 30-year Civil War, having only very recently seen its end. In Angola, I don't believe I know of a single person that has heard of Narcolepsy. It's truly not widely discussed in any way. To be honest, I had never even heard about it until I began my own research into the symptoms I was feeling. I knew there was something wrong with me, I just didn't know what. And this wasn't a new phenomenon... I had suspected this for years. But I ignored it. For a long time, I did believe it was just me, it was a "trait" of mine...but as the years went on, I realized this could not be a simple trait...my body was trying to tell me something but I had never allowed myself to truly acknowledge it. So, what is Narcolepsy? "Narcolepsy is a chronic neurological disorder that can begin at any age and continues throughout life. It is a sleep disorder, involving irregular patterns in Rapid Eye Movement (REM) sleep, and significant disruptions of the normal sleep/wake cycle." This definition was provided by the Narcolepsy Network website. They are a non-profit organization that provide patient support in the United States. There are actually two types of Narcolepsy, Type 1 and Type 2. Type 1 refers to Narcolepsy with Cataplexy, and Type 2 is just Narcolepsy without Cataplexy (although there is a possibility of this group developing cataplexy in the future). Contrary to popular belief, Narcolepsy is not about being a "lazy" person or feeling "sleepy". We do not just drop asleep in the middle of the street. We don't actually sleep more than the average person, our REM sleep just works differently, in such a way that it is actually distributed throughout the day and night. Aside from the daytime sleepiness, most people don't actually know that there are other, more serious and even scarier, symptoms of this disorder. What are the symptoms? 1. Excessive Daytime Sleepiness An overwhelming urge to sleep at inappropriate time during the day. Usually involves "sleep attacks" or "micro-sleeps". Sometimes have no memory of falling asleep during these periods. Often these moments only last a few seconds, although some can be longer. Experts say this urge to sleep would feel comparable to how someone without narcolepsy would feel after staying awake for 48-72 hours. 2. Disrupted Night-time Sleep Fall asleep quickly but with various interruptions throughout the night. Can sometimes feel wide awake for long periods in the night. 3. Cataplexy Muscles suddenly go limp or significantly weaken without warning usually related to feeling a strong emotion or emotional sensation (e.g crying, laughing, feeling angry, or scared). Can cause falling over or losing control of facial expressions. Can vary from seconds to minutes. Although sometimes it may appear the person is sleeping (eyes may be closed), they are very much conscious throughout this attack. 4. Hypnagogic and hypnopompic hallucinations Visual, auditory, or tactile hallucinations upon falling asleep or waking up. These can be frightening and confusing. Hallucinations when falling asleep. Hypnagogic (when falling asleep) and hypnopompic (when waking up). These hallucinations almost always feel extremely real and legitimate. 5. Sleep paralysis The inability to move for a few seconds or minutes upon falling asleep or waking up. It is often accompanied by hypnagogic or hypnopompic hallucinations. Can have distressing feelings as if something was holding them down, or that something/one was in the room with them. So this is a very basic introduction to Narcolepsy. It is not a straight-forward disorder, and there is still so much research to be done, so much we still don't know. To those of you who relate and suffer from these same issues, please reach out if feel the need to or just want someone to talk to about your story. To those of you, who are hearing about this for the first time, I would ask you to consider taking some time and thinking about the people in your life. There could be someone you know who may suffer from this same condition...and not even know it. I know there are countries that are further along and have greater awareness on this issue. But so far, through my research, it's clear that the USA in particular have far greater knowledge and community support for people diagnosed with Narcolepsy. The majority of countries don't. I currently live in Portugal, and there is no organization or association for Narcolepsy. It is certainly not common knowledge. Finally, I honestly and truly hope this blog can provide some kind of contribution in raising awareness for Narcolepsy in any way possible, and maybe be a place where we can support one another in this daily battle. Feel free to share it with people you know, as there will definitely be more information and personal stories to come from now on. Thank you so much for taking the time to read this!