Friday, June 22, 2012

GUEST BLOGGER: Elle Lothlorien


Sleepy Stories: How Real Life Makes For Great Fiction (and Vice Versa)










The last thing I remember, I was in an elevator, rattling with agitation like a washing machine trying to spin an uneven load of laundry. A kind woman in a uniform—maybe police, maybe security—stood next to me. “Sorry, I get tired,” I tried to tell her through my tears. My words came out like mush.
When I wake up, I’m on a hotel room bed in my clothes. I sit up fast, trying to make sense of what’s happened. I can hear people talking, but I can’t see them. Then it all comes back to me.  
Hotel. Grand Hyatt. Conference.
A woman appears from the hallway, and I’m relieved to find that I know her. She’s my friend and my roommate, and I’m at Thrillerfest, a writer’s conference held every year in New York City. She asks me how I feel, but she doesn’t ask “what happened?” She might not know the specifics, but she has a pretty good idea.
I have narcolepsy. My body’s sleep-wake cycle doesn’t work properly. No matter how many hours of sleep I’ve had—five, eight, twelve—I feel like I’ve been on a sleepless bender for a week. As a result, my brain is always trying to put me to sleep. It doesn’t care where I am, or what I’m doing, or who I’m with.
I outsmart it with a medication that I take every three hours, using an alarm on my phone to remind me. When the alarm goes off, I have about a ten minute window in which to take my next dose. If I don’t, things start to happen, cascading from bad to worse, until I either take my medicine or find something go to sleep on. 
Unfortunately for me, when my alarm sounded, my pills were in my room. Even more unfortunate: I couldn’t get the hotel room door open. We’d complained several times since our arrival about the lock; sometimes the key would work, sometimes it wouldn’t. This was a “sometimes it wouldn’t” situation.
By the time I reached the lobby, my head was already filling with cobwebs. I found a person wearing a hotel uniform and I blurted out the words I’d been reciting over and over in my mind: “I can’t get into my room, and I’m having a medical emergency!”
Maybe he heard “I can’t find my broom, and I’m here for the insurgency!” because he told me to stand in line at the front desk.
And that was it. Time was up, sand through the hourglass, the window closed.
First to go are nouns. I can “see” the words in my head that I’m trying to say—cat, mat, rat—but when I try to say them, it’s like the worst version of “cat’s got your tongue” you can imagine. One noun that I am able to say: “thing.” As in: “Can you hand me the thing on the thing?” As the situation goes from bad to worse, I sound like I have a mouthful of rocks, no matter what I say.
 Next to set in is the confusion. Suddenly, I don’t know where I am. My brain feels like a huge bank of old, rusty filing cabinets, with drawers chock-full of useful information—if only I could open them. Mine are stuck. No matter how hard I pull, they won’t budge.
As I stumbled around the hotel lobby in circles, my panic growing right alongside an irresistible need to sleep, I could hear people behind me muttering.  
“I don’t know what she’s doing.”
“I think she’s drunk.”
“Call security.”
Many people think they know what narcolepsy is because they’ve “seen it on TV.” What I call “Hollywood narcolepsy,” is typically used for comic effect in movies or TV, usually by some guy stopping in mid-conversation, falling face-first into a bowl of shrimp bisque, and sawing logs like a lumberjack.
If you want to get technical, the full-body collapse described above is a symptom of narcolepsy called “cataplexy.” My cataplexy is mild by comparison, with speech loss, slurred words, mild muscle control problems in my face, arms and legs (hence the mushy sounding words and the stumbling), confusion, and blackouts. After about ten minutes, one of two things will happen:

1.     I will take my medicine.
2.     I will sleep.

Whichever one I do, I will feel completely normal twenty to thirty minutes later.
Narcolepsy is a pain in the ass. My symptoms have worsened in the nearly ten years I’ve had it, and it’s affected almost every part of my life: work, family, hobbies. Everyone in my family and most of my friends know I have it (hang around me long enough and it becomes a little difficult to hide). I wear a medical alert bracelet (in case I lose the ability to speak clearly, or I need to lie down and sleep, I can just hold it out to someone and won’t have to worry that they’ll call 911 or security). It reads:

Narcolepsy
Cataplexy
May have slurred speech
or become suddenly sleepy
This is not a medical emergency



When readers crack open my romantic comedy/suspense Sleeping Beauty or the “alternate ending” version Sleeping Beauty Wakes Up! they find this dedication:
 
For my mother, Linda Loy, who selflessly and lovingly
put the pieces of my life back together while I slept.

After reading that, it’s natural for people to assume that there is an autobiographic element to Sleeping Beauty—that is, that the main character, Claire Beau, is a fictionalized me.
She is not.

In December 2010, my romantic comedy The Frog Prince became an Amazon bestseller. Unfortunately, I was still flailing around, still thinking about my next book. I knew I had to stick to the “loose riff on a fairy tale” theme that had made Frog so popular, but I was fresh out of ideas. And then…
One morning on NPR, I heard a story about a young woman who suffered from a sleep disorder called Klein-Levin Syndrome (KLS), also called "Sleeping Beauty Syndrome." KLS is severely debilitating, with sufferers experiencing prolonged bouts of sleep combined with blackout periods that can last for day or weeks. Oftentimes, they will appear by others to be functioning perfectly normal, but will have no recollection of this time after they "wake up."
Two things I took away from this story:

1.     Someone has it worse than me.
2.     C’mon…“Sleeping Beauty Syndrome?” It was like I’d prayed to the fiction gods, and they’d delivered with all the subtlety of a safe dropped on my head.

Sleeping Beauty (A Romantic Comedy/Suspense) started out as a straightforward comedy about a woman who "wakes up" to find that she had supposedly in the middle of a whirlwind love affair with a man she despises. Not long after I began the novel, the symptoms of my own illness worsened, beginning with mini-blackouts called “automatic behavior” that lasted about ten or fifteen seconds. Although I’d appear to be functioning normally to anyone watching—having a conversation, loading the dishwasher—I’d “come to” and have blanks in my memory, or be in a room I didn’t remember walking to. Depending on what I’m doing and where I am, this can be mildly irritating or hugely embarrassing. If I’m at home, the damage is minimal. If I’m in public, I might “come to” in the middle of conversation with someone, and ask them a question I apparently already asked, or suddenly just “check out,” my eyes going out of focus, my eyelids drooping, and my jaw dropping open.
Although the characters in Sleeping Beauty are very funny, and they find themselves in situations that are very humorous (à la The Frog Prince), as I wrote it, the story began to take a more somber, mysterious turn. This was a result, no doubt, of the struggle I was having managing the long-term effects of narcolepsy in my own life.
The Frog Prince became a bestseller after only three months. Sleeping Beauty, at six months, was a little more sluggish to do so. (Perhaps it was tired.) It will, I think, always be the novel nearest and dearest to my heart. Every laugh and tear in the book was cathartic to write, and I often think that if Claire Beau was a real person, we would understand each other very well.
Hell, if either of us was able to stay awake long enough, we might even be friends.

My next romantic comedy Rapunzel will be out later this summer, followed by Alice in Wonderland just in time for Christmas.



3 comments:

Peg Brantley said...

What an amazing blog post! I will no longer make assumptions about people based on their speech.

Thanks for waking me up and opening my eyes… so to speak.

Thanks, Patricia for hosting this!

Carolyn J. Rose said...

Inspirational!
And I love your covers.

Elle Lothlorien said...

Thanks so much, Peg and Carolyn (and Patty too of course)!

P.S. Peg: It still might not hurt to keep a breathalyzer if you hang around me, especially on Friday/Saturday nights. Hey--it's summer! :-)