Hey y'all! For those who may not know, I am a proud narcoleptic! I am excited to be involved with the Sleep In 2106 in order to raise awareness about Narcolepsy, a sleeping disorder few people really know about.
I first started to experience symptoms in 7th grade and immediately knew something was wrong. Unfortunately, no one else believed me, but after my hallucinations and cataplexy worsened to a very noticeable degree, I was finally tested and diagnosed 2 years later, in 9th grade. The picture I posted is from a recent sleep study I did. I figure anyone who can still sleep peacefully with that many wires glued to their body must be at least somewhat ill, lol.
It is often very difficult to explain to people what it means to be narcoleptic. I could give you the scientific explanation, but any doctor could tell you that. Google could. That's the easy part. It's even the comforting part in a way, knowing scientifically just how and why you're so broken. What's hard to explain, to talk about, is the emotional and psychological stuff and how narcolepsy affects your everyday life. It's hard to explain the level of constant exhaustion, the debilitating nighttime terror and paranoia that results from the nightmares and hallucinations, the deep ridden anxiety and waves of depression that come and go, the shame, the embarrassment, the lack of energy to complete basic tasks, the inability to partake in many things, the exertion of trying to control your emotions so as to avoid cataplexy attacks, the ironic insomnia... I can tell you matter of factly what I am, what happens to my body, the science of it all. We can all explain those things. The hard part is what goes so much deeper, the feelings that tear you apart that you can't even begin to explain.
Sometimes I try to... But how do you explain to someone who's never lost touch with reality how terrifying it is to have such a fragile grip on it? How do you explain the paranoia of waiting for the other shoe to drop, fearing you'll one day lose your mind and sanity for good? How do you explain the sheepishness of standing in PJs in your living room at 3am, trying not to look and sound nuts, as you apologize profusely for wasting the time of the police officers who responded to your distressed 911 call that turned out to just be a hallucination? How do you explain how real it all felt- the gun pressed against your back, the breath and voice of a grown man in your ear...? Or having to be told kindly by one of the cops that you needed to seek professional help and then by your parents that you're, from hence forth, banned from ever calling 911 without their permission again? How do you explain when depression and anxiety try to eat at you, like this itch you can't scratch, like bugs crawling all over your body, under your skin where you can't reach them? How do you explain the temptation to do something wild, reckless, or stupid just to make the pain go away? Or the need to fabricate some sense of control in your life that pushes you to try to control as much of it as you can? Or the annoyance, hurt, and humiliation of hearing people say things that are insensitive, misinformed, ignorant or just plain mean? Or the fear that you'll never get to live life the way you'd like because narcolepsy will always be there to drag you down? Simply put, how do you explain "crazy" to people who aren't?
Yet as hard as it is to explain the bad, I believe it's just as hard sometimes to explain the good. The same stubbornness that initially pushed me to be in denial of my struggles is the one that continuously pushes me to keep fighting. I am 26 years old, and, over a decade after being diagnosed, I've finally reached a point in my life where I'm not ashamed of what I am anymore. I've grown to accept it, even love it in a way. It's become such a part of me that I can't love myself without loving it as well, without finding pride in it and what it has given me- courage, strength, heart, compassion, understanding, and, above all, perspective. There are many good things, bright spots, that are as equally inexplicable as the dark ones... And I put all my efforts in focusing on those spots. If you'd asked me as a young teenager what my philosophy was in life, you would have been met with cynicism and pessimism. I was a very different person back then. I am now a whole-hearted optimist, mainly because I have to be. I have no choice but to always see the good because there's simply no room in my life for anything else; because I know that if I let myself go to that dark place, even for a second, I don't know if or when I'd ever come back, and that's simply not a risk I'm willing to take. I treasure and search for the good, the sunshine, wherever I can find it, heightening my appreciation for the little things in life.
My narcolepsy takes on many roles in my life. Sometimes it's my arch nemesis, sometimes it's my weird quirky friend who pushes me to be better, sometimes it's the comforting sage figure who shows up at just the right moment to offer necessary words of wisdom, and sometimes it represents all the bad influences in life- the people we're drawn to who only hurt us, the friends we shouldn't make, the choices we regret, the wounds we help inflict... And, still, other times it's just a plot device that helps move along the story of my life. Whatever role narcolepsy chooses to play, it will always be there, serving as an important relationship in my life. Sometimes it'll be harmonious and sometimes turbulent, sometimes helpful and sometimes burdensome, sometimes beautiful and sometimes ugly, and I can't control which it'll be from day to day, but I do control how I choose to respond to it. These characters may always be in my life, but I try very hard not to let them control it. I run my life; they simply live in it.
As narcoleptics, trying to control our lives means having to be very self aware, learn as much as we can, and try different strategies to help reduce symptoms. This could mean drugs, therapy, and/or lifestyle changes. But regardless of the path we choose, the reality is that doctors still know very little about this disorder, making diagnosis and treatment very difficult for people. Furthermore, stigma, misinformation, and ignorance make the disorder even harder to deal with for people who are already suffering. Narcolepsy finds itself at the butt of many jokes, and Hollywood and the media often characterize it in humorous but inaccurate ways. We need help raising awareness about the true nature of the disorder and what it does to people. Help me to help those who are still struggling and suffering!
My story is just one of thousands, and what I've told is just a small drop in the bucket of it all. So many have it far worse than me and I am so lucky to be in a good place now, happy and mostly medication free. Writing this wasn't a choice. I needed to.
I need to be honest. I need to be real. I need to give back. And I really need to try to help others understand something so difficult to explain, to understand me... My family and friends have helped and supported me on my journey, as have complete strangers, and I will never forget it. You are always thankful to the people in your life who help you learn to love yourself, warts and all, the people who help lift you when your down, the people who listen and understand unconditionally. Because those people save our lives in little ways every day. And when you feel like you're losing your mind, they remind you how totally normal you actually are. Because the most normal thing we can all be is not normal. I may be a little crazy, but so are my friends, and that's why I love them. Whether the crazy is more of the clinical sort like mine or the personality sort like my friends (or both), we embrace it, because it's what makes us fun, bold, interesting and beautiful.
My donation is to those who still need the support I'm so lucky to have and the love I've learned to give myself. Narcolepsy isn't my enemy anymore and, with our help, it doesn't need to be anybody's. Donate, participate, and help make a difference! Thanks for your support! :)