The Monster In The Closet

posted April 20, 2018

An Open Letter to People with Narcolepsy

Everyone is welcome to read this. Maybe you have someone in your life with narcolepsy, or maybe you’re curious about the disorder, but for once I have a specific audience in mind. I haven’t written in this blog in close to a year, and until this morning I couldn’t say why. I can divide my personal history into two distinct periods now: The years before, and the years after Xyrem; that crazy, narcolepsy-specific drug that allows some of us to sleep normally. I wrote most of the posts on this blog in the before period.

First: You Are Not Alone

Unless you know another narcoleptic, you might feel isolated. I have a better than average support system of sympathetic friends and family, but still feel isolated. I’ve never met one of us in the flesh. I don’t think anyone can accurately explain what it’s like to live with this.  I haven’t, after hundreds of attempts.

Nobody really gets it. It’s not their fault. I don’t know that I even get it. It’s still weird to me that a human brain would malfunction on such a basic level. Get your shit together brain! Sleep is not rocket science. The best friends and family get that they don’t get this.

Second: You Are Not a Burden

I hate that I need to say that. There’s little doubt you sometimes feel like one. It’s hard enough to live with narcolepsy without adding the guilt others impose on us, often without knowing or trying. Everyone has felt tired and no one can help but superimpose that feeling on our disorder. They try. Their frustration is real, but the guilt is not yours to carry.

That guilt is not a sign of your weakness. They shouldn’t ask you to own something that belongs to them, and you don’t have to claim it if they lay it at your feet. Our tired is nothing like their tired. I say that without contempt. I know there’s no way for them to know that the monster in the closet is a part of us, a dismembered piece who fights in the dark like a terrified animal. We can’t control it. We can’t stop it. But we live with it, every moment of our lives, and survive. They might never understand, but we must each realize our struggle is evidence of strength, not weakness. We face the monster every night, lose more battles than we win, and get up and live the lives we share with everyone.

In some ways I feel like I’m on the other side of the struggle.

I’m one of the lucky ones. Xyrem works for me, has dramatically transformed my life over the past two years. The only thing that keeps me firmly and forever a narcoleptic are those nights when I have to skip a dose. The monster in the closet is always waiting. He perches on the edge of un-medicated sleep with the terror, the hallucinations, the fitful tossing and turning of the narcoleptic’s endless day. Every time I’ve had to skip a dose I spend the next day shocked I functioned as well as I did without treatment.

And now, I’m speaking to a very specific subset of our people, those who can’t get treatment or for whom treatment doesn’t work. I think of you daily and I love you. I cried when I wrote that, because it’s true. I love you from the place in me that doesn’t know a single one of us in the flesh. You are closer to me in that respect than anyone I know. I don’t know you, but I feel completely that this disorder makes you my sister or brother.

No matter how many nights I sleep normally, I know that waiting monster is not taking a night off for you, and I think about that often. I hate that sonuvabitch for you. Everyone deserves to sleep. If I could, I’d tag in for you, and wrestle your monster. It would be worth losing a few nights of the sleep that is so precious to me now, so more of us could get some rest.

I hope they find a cure for this bastard in our lifetimes.

I thought I was a different person.

The first few months into medication, I felt that altered. I mean, I felt better, extraordinarily better. I still do. The regular deep sleep has eliminated a laundry list of issues. Anxiety, depression, and the inability to concentrate are only the occasional whisper and not the booming distortion of unchecked narcolepsy. But I’m not a different person. The monster, even at his worst, couldn’t completely destroy me, and he won’t destroy you. I still felt joy and motivation and love. I still had hope and lived my life.

So, hold on, my extended family, and know we’re all with you.


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