#oneaday Day 9 –Taboo: Do I Really Fall into This Category?

I’m a big fan of not watching TV. If, and when I actually do sit down to watch the ole poop tube, I usually entertain myself with weird documentaries or So You Think You Can Dance. Other than that, I find television to be a heaping load of garbage – especially reality television (barf!). But, my wife recorded a great new series called Taboo on the National Geographic station (one of my personal favourites) that really stuck a chord with me. Why? Because in this one particular episode, one of the so-called “taboos” featured an elderly man that suffered from the neurological disease known as narcolepsy – of which I also suffer from as well.

While it doesn’t actually surprise me that some would consider the disease a taboo of sorts, it also shows just how little is actually known about this terrible disease. See, I’ve been diagnosed for nearly six years now and the two years prior to this were a living hell, as I desperately tried to find out what was wrong with me – I was labelled suicidal, depressed, crazy, etc. when all I wanted was someone to listen and help me instead of trying to shove flippin’ antidepressants down my throat. I could get really detailed here, but maybe that’s for another post, today I want to focus on one particular issue here. If anyone does read this and want to further discuss this – or the mile long list of other ailments that come along with narcolepsy — please drop me a line in the comments section and I’d love to discuss further here, or in private emails.  OK, so I’ve got this flippin’ disease and, well, it’s not like what the show gave the impression of it being at all in my case.

See, narcolepsy is commonly known as “that disease/problem that causes people to fall over asleep while walking.” Actually, this isn’t true at all. The thing that causes complete loss of muscle control is called cataplexy, and while it usually walks hand-in-hand with narcolepsy – I suffer from it as well – I don’t fall down, and I don’t sleep all day either. The poor gentleman in the show though, does have full-blown narcolepsy/cataplexy and sadly, he suffers to the greatest extent from both conditions. Narcolepsy causes excessive daytime sleepiness, migraine headaches, hypnagogic hallucinations (both during sleep and while awake), sleep paralysis and many, many more crazy things. Cataplexy though – without getting into the medical details behind it – directly affects the muscles. This is where the sudden muscle loss comes into play and is nearly always brought on my strong emotions, usually laughter. Needless to say, those that suffer from strong cataplexy attacks become socially withdrawn and emotionless because of this. It’s a terrible disease that has no cure and few medicines the help with it – the ones available are terrible expensive!

But, in some cases, those with narcolepsy/cataplexy don’t suffer from the full extent of these diseases. My personal doctor calls my case a “light case of narcolepsy,” but while I praise the heavens above that I don’t have a severe case, nonetheless, to everyone on paper, there’s no such thing. It’s cost me thousands of dollars and hours of my time (and my loving wife’s), but I’ve proven to them, through more test than I ever hope to endure again,  that I can indeed function normally with the proper regulation of medications. I’ve reclaimed my commercial driver’s license, motorcycle license, etc. and I dare someone to tell me that I shouldn’t do these things. I’ve fought hard to reclaim the normalities of life that were stripped away from me and for the most part, I live a completely normal life. Granted, daily medications and a strict sleep schedule are now everyday functions for me, as well as I tire quite easily, but otherwise, I’m pretty much a normal, healthy, 30yr old guy.

So am I still a taboo? I don’t think so, nor do I really care. I just found it interesting on how little is still known about my disease – not that that was surprising at all. Yes, severe narcolepsy could very well fall into this category, and considering narcolepsy is a progressive disease, I could potentially suffer in these way as well. But for the time being, I’d never consider myself to be a taboo. I also believe that attitude (and faith for me) plays a major role in how disease affects our bodies. I truly believe that if I didn’t fight so hard to overcome my illness – still do on some occasions —  even though I’ll never live without it again, I’d be much sicker than I am today.

Very few that know me even know I have narcolepsy and I don’t desire to talk much about it to people that don’t suffer from it. It’s very difficult to explain and so completely misunderstood. For someone like myself, I can be greatly suffering on the inside, but on the outside I look perfectly fine. In our society, this isn’t acceptable. People don’t believe you, and it’s here that I and so many like me find the most difficulty living with narcolepsy. We walk, talk, drive and live normal lives, but sometimes, the inside of our heads is a living nightmare that nobody without the disease can possibly understand. Hang on? Now that I think of it, maybe that is indeed taboo!

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5 comments

  1. What amazes me is that narcolepsy is still so misunderstood, but chronic insomnia (which I suffer from – hah, I’m the exact opposite of you!) is such a well-documented and studies disease.

    1. Haha.. true that man. Even though we narcoleptic types suffer from the extreme desire to sleep, when we do try to sleep, sometimes we find ourselves fighting to do so quite often. I’ve actually went 9 days without sleep before! Dying to sleep all day long, but can’t sleep all night long. It’s infuriating! Haha

  2. Reading your story my dear son,saddings me,but amazes me as well. I kind of know what you are talking about.As I read your diagnosis on this disease,I feel more and more like your Dads sleep apnea was miss diagnosed and he may well suffer from the same misunderstood disease as you.For living with him for over 22 years now,I can tell something more is there. I love you and wish I could help you and him. Stay strong,and spread the word 🙂

    1. Thanks Missy.

      I’ve actually talked to Dad about his sleep problems and thankfully, he definitely doesn’t show the symptoms for narcolepsy. The disease can only be passed from mother to child, so the chances of him having it too would be astronomical.

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