Tag Archives: Narcolepsy

Dignity is valuable; but, our lives are valuable too.

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Mothers, don’t let your daughters grow up watching Gone With the Wind unless you’re prepared to offer some very complicated voice over narratives about–and this is just a start–slavery, dialectics, unrealistic expectations, entitlement, anorexia, staying, S/M, withholding, leaving, prostitution, and the South. As someone who is curious about the formative power of cultural texts, i am interested in the books and films i was drawn to as a young person. If i was ever going to write one of those ‘everything i ever needed to know i learned from’ treatises, Gone With the Wind would be my source. To be sure, i was also given some of these lessons in a much more potent form by my surrounders, but this film seems to have gotten all of the best of the worst just about right. My conversations with Mom about it went something like this:

Me: Does Ashley love Scarlett, too?
Mom: “i don’t know.”
Me: Then why does he kiss her?
Mom: “Because he’s spineless.”

Mom doesn’t mince words, and she’s usually right, and yes, Ashley is a total weenie, but something like, “Because sometimes we’re attracted to people we don’t really like,” would have been helpful. Or even, “Why is Scarlett so attached to Ashley? He’s self-absorbed and he’s never really there for her and his mother/whore complex is out of control. Is it possible that she really loves Rhett, who is actually crazy about her?” Even better, “What do you think about the fact that Mammy is a slave in the first half of the movie, but after the war she is supposedly free?” And, very importantly: “You understand that even though Scarlett has the best dresses she’s not exactly, like, a role model, right?” Because, no–i was not yet versed in the manipulative devices granted to the antihero. Scarlett’s refrain, “I can’t think about that right now. If I do, I’ll go crazy. I’ll think about that tomorrow,” got me through more than one shit day when i was a kid. After all of the other jerks ran off to war, Scarlett was the one who got the fields planted and made sure everyone had something to eat. Scarlett shot the yankee when he tried to steal her mother’s jewels. Scarlett came up with the idea to fashion the iconic green dress with the chartreuse underskirt and the drapery cord belt out of her mother’s velvet curtains so that she could trick Rhett into thinking she wasn’t totally desperate: “I’m going to Atlanta for that three hundred dollars, and I’ve got to go looking like a queen.” Mammy has to make it, of course, but we’re supposed to gloss that detail.

Nonetheless, i hardly grew up under civil war. When i first began writing this blog, someone very close to me read it and responded, rather angrily, that i seemed to think that readers with more ramshackle childhoods than his own might be able to engage the blog better than he could. i wasn’t surprised by his response; i know that i have a habit of romanticizing the things that hurt because…because why? Because it makes me feel like i’m in control? Because it changes the narrative? Because i like to feel bad? No, no one actually enjoys feeling bad, right? Right? Right, but it’s not everyone who actually wants to feel, either. And sometimes, quite often actually, extreme discomfort feels really good (read: familiar) to me; but, surely there has to be another way to go about experiencing this? My body, my narcolepsy usually gets the upper hand in this conflict. Stress levels go up, i start really pushing myself, my body says uh-uh and gives me some kind of internal rufie. When i’m at work and this happens, i will often go and sink my hands into large buckets of ice that are meant to be chilling wine. Slowly, i come to, because i hate being cold.

Can’t Remember What i Miss.

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Every morning, as i wake up, and often at night, as i am falling asleep, i have to remind myself of where i am. Narcolepsy keeps me from having a gentle entry or exit to and from dreaming– leaving me where i was right where i am. i pop out of sleep, and start planning a day in Gainesville–i’m going to get my coffee at the Slice and then ride my bike to campus. i don’t teach until 1:55, so i’ll hide out in my office and catch up on grading. After class i’ll…go to the pool? Wait, for some reason i can’t…go to the pool…today. And, this bed. It’s too close to the windows and there’s only one cat on it…where is the back i sleep with my face pressed right into, knees tucked into the back of knees, arms tight around waist. Not, no, no. Stop it. Back, it starts coming back–i’m in Brooklyn. i run the details for myself–everything that’s different, the arrangement of these rooms i live in now, the people i will or will not find in them, the weather. Gradually, i am convinced.

For as long as i’ve lived in New York, my dreams are mostly set in the only house i’ve ever lived in for more than 3 years: a brick house with yellow linoleum in the kitchen and the hallways and differently colored carpet in each room. The house with a fireplace and a long kitchen and a back porch lined with railroad ties and flower beds. It has a yard with a concrete basketball court and a chicken coop wrapped in honeysuckle and palmettos around the pines and antique roses and blackberries in the palmettos, and rattle snakes and a white cat and two golden retrievers. For a long time, when i was little, this was the place where i grew up. When my parents left Miami, where they had both grown up, they moved to Palatka, Florida–famous for the assy stench of its paper mill. My Dad worked for Florida Power and Light, and some of his friends from work had transferred north already–setting up idyllic, vaguely hippie, enclaves. My parents were still married for most of my time at the house in Palatka, and i remember an antique sewing machine that was the perch for a tall, skinny, wooden birdhouse with little finches flying around inside. i remember a fuchsia crepe myrtle tree in the front yard, waxy, prolific gardenia bushes, zinnias and petunias and roses and pine trees and oaks and Spanish moss and a creek in the back yard. An above ground pool. Macrame and wallpaper and wood panelling on the walls. i’ve never been someone who writes down my dreams or looks to them for clues to my waking life, but the sheer persistence of this place in my subconscious makes it hard for me not to ask what i might be trying to tell myself. i’m not so good at listening to the advice my rational self tries to give–i don’t really trust it, but maybe i could find something in this other non-linear register more persuasive?

Sometimes i think there is already too much in there, and the narcolepsy is like a systems crash. Many people who have narcolepsy are also obese, because the brain protein that tells you when to stop eating is like? the same as? the one that lets a body sleep deeply enough to earn regular sleep cycles. Physical obesity is luckily a problem i don’t have, but physically, emotionally, and intellectually–i can’t really get enough. i want to know everything, feel everything. Nothing feels like too much until i wake up on my kitchen floor at 4 in the morning, curled up under the ironing board, usually with a snack clenched in my fist. Sometimes this means i came home from work, walked in the door, opened the fridge and grabbed the first thing i saw and then sat right down. Whether or not i’ve had anything to drink seems to be irrelevant–exhaustion is the trigger, and it seems to be a kitchen v. bedroom sort of thing–like sleeping on the couch in your underwear while your wife is out of town.

The only thing i have from that house is a photo album. Shortly after my Mom left, when the house was kind of a wreck all the time and we were trying to figure out what it would be like without her, i made a photo album. There were little 4×4 photos with dates and notes in my grandmother’s handwriting shoved into kitchen drawers and newer envelopes of 4×6’s falling out of other albums and in closets that no one thought they cared about. For a minute maybe it seemed like a time we might be better off forgetting. i started saving them when i found them, and eventually put them into a kind of crappy brown photo album. The pages are mostly yellowed now and some of the photos were taken out and never returned, but they are the pictures of the time we all spent together in that house. Like all of the other photos i’ve saved, and the walls of books that watch me sleep, and the crates of records, and my portable turntable that i pull up close–they are evidence. Tangible proof of another place and of a different way of doing this.

Down for you is up

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i am beginning to wonder how the narcolepsy works on my already busted sense of time. i mean, if i simply can’t set sleep aside for the proper time, and if this is not an indication of actual exhaustion or engagement, then it must contribute to my inability/refusal to run on schedule. When i warn someone i’ve newly met about it (the episodes are rarely dramatic, but i will zone out and i will probably seem to be awake–i might even be stuffing my face or walking–but i am indeed unconscious; my nervous system is shot, so i shake when i’m angry, etc.), his or her first question is almost always, “When did it start?” i honestly just don’t know. i’ve always liked to nap and fallen asleep at inappropriate times, but i’ve also kept irregular hours for my entire adult life. i stay up late. i wake up early. i nap a lot. i worked too much while i was pregnant. Food turns me into a zombie. Are these symptoms of the narcolepsy, or are they the things that provoked it? i am embarrassingly inept at math. After a full cup of coffee, i often wake up face-down in my book at coffee shops. i’ve woken up many times on the subway with my book on the floor in front of me–notecards sprawled everywhere and my pen rolling down the car. i am always at least 5 minutes late. Lately, in the afternoons, Jonas has been yelling “OPEN!” at me when i start trailing off and my eyelids drop. At night, reading stories to him, i randomly start ad-libbing, and he corrects me every time i make a mistake, snapping me back for a second.  Many nights, i come in late and head straight for the fridge. i wake up a few hours later, a bag of shredded cheese or chips in my hand and my body stretched out like a crime scene on the kitchen floor.

This is all compounded by the fact that i don’t kill time: i practice a serious dedication to nostalgia. When i began my dissertation, i wanted to organize it around a preoccupation with what i called “productive melancholy”–a sort of permanent refusal to mourn or to ‘get on with it’. If heteronormativity is a mournful response to queer possibilities, then what would it mean to not let go of those supposedly unfortunate desires in favor of a succinct timeline? Instead of the one on which everyone graduates on time, never takes incompletes, gets their shit together early enough to have several kids, and always negotiates for the most lucrative job, what other life narratives will do? What would it mean to let go of professional advancement? Is it really for everyone? What gets lost in the turns, when only the family gets reinforced as the ties that matter, and semester after semester of students become so many piles of term papers, co-workers become some kind of Fordist cog, and work is always practically designed to produce the most surplus value? Is there a different economy to the time my body has decided to occupy?

Cathy Caruth suggests that one indication of how time is not simply a repetition of beginning, middle, and end, of signs that signify and mean once and for all, is trauma.  Trauma figures the way an event might not signify in its initial moment of enunciation, but its effects might be legible only much later, and even as legibility becomes possible, progress doesn’t. It happened, it didn’t/couldn’t mean anything/mean yet. Time passes, and meaning becomes not only available, but more aggressive and repetitive. For Caruth, this is also an argument about history–if time flows in multiple directions, then the question of “what happened” is hugely complicated.

As for what happens, is it possible to not be goal-oriented in our feelings–romantic, erotic, intellectual, and otherwise, or is this just another narcoleptic question, straight to REM, no stage one or four of sleep?  Narcoleptics hit the ground running with their dreaming. As soon as they nod off, dreaming begins–often giving them the hallucinatory sensation of reality.  i am protective and impractical of letting go. i “waste” a lot of time on feelings and attachments that will not ever, “Go anywhere.”  Feelings seem just as real as, well, what else is there? Once, before my narcolepsy was diagnosed, my Mom sent me to a medical empath.  i walked into the room and sat down, and she asked me how i was feeling. She asked me to talk about my family, and after a minute or so she said, so who is this guy? Her theory was that there was someone from my past who  i was so attached to, and/or who was so attached to me, that i was allowing it to destroy me physically–they call it being “corded” in the biz. What’s weird is that i hadn’t mentioned any guy.  She gave me her card and told me to call her when i got back to New York if i wanted to commit to shaking him loose. i never called.

Give Out

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My middle name is Sunshine. That’s what my parents decided, and it’s funny after a few drinks. It doesn’t quite match my temperament; that is part of the joke. i can’t say that it hasn’t always, but once i started learning that i could say no to things, my insistence on that word (that word that no one thinks she wants to hear) shortened my candidacy for beacon of light-hood.

In a further flattening of affect, a couple of years ago i was diagnosed with narcolepsy, a central nervous system disorder that produces the sudden, uncontrollable onset of sleep. There is no explanation for why people “get” it, although it seems to have something to do with heredity and something to do with a shortage of a brain protein called hypocretin that may regulate when and how we sleep. Other symptoms include, “features of dreaming that occur while awake,” and cataplexy–attacks of muscle paralysis triggered by strong emotions. i exhibit both. This means that i have to constantly consider my behavior before and while doing almost everything. Getting in an argument while walking down the street is basically impossible–my knees buckle and my legs just give out. Telling a joke is hard. Giving someone a basic complement, if i really mean it, makes me tremble. Allowing myself to get frustrated when doing things like, say, waiting tables is also problematic. My hands start to shake, plates begin to clang, and i have to take a deep breath and stabilize myself on the edge of a table or the bar to keep from falling on diners.  i get sleepiest after i eat, which means that eating alone at a restaurant, sitting at the bar–one of my favorite things to do, can also be tricky. The subway is a crapshoot. In general, i have had to become less of a hothead, because when i try to lose my cool, my body doesn’t cooperate. For someone who had never been very interested in controlling herself, this has forced extensive modifications of my nature.

Claire Denis, Trouble Every Day, 2001

Research that produces articles with titles like, “Brain Protein Tied to Sleep and Feeding also Involved in Bodily Sensations,” suggests that hypocretin also sways how we eat and how we respond to pain. This study reports: “Perl and his colleagues were intrigued by the observation that hypocretin nerve fibers terminate in a spinal cord region involved in sensations about pain-causing events…It may be that a decrease of the protein ‘helps people sleep and minimizes attention to minor inputs. Conversely, an increase helps a person to continue to do an essential function like eating even when there are minor inputs from the peripheral nervous system, such as occurs when one sits on a rough edge,’ the neurophysiologist explained.”

A decrease could presumably result in someone who easily loses her appetite when she sits on rough edges? Someone who doesn’t mind rough edges? Someone who snuggles up to rough edges and prefers the floor to pillows? Or, as the Pavement song has it, “Nothing gets me off so completely, than when you put it down ten feet in the ground.  Call it response (to a) negative home.” i am interested in these sorts of explanations, but i am less interested in the “why?” of narcolepsy than i am in thinking about how it works for me. What is my body trying to get me out of, or back to?  In his essay “Queerness as Horizon,” Jose Esteban Munoz pulls a phrase from Ernst Bloch–“the no-longer-conscious,”–which he explains as, “…a term that attempts to enact a more precise understanding of the work that the past does, what can be understood as the performative force of the past.”  Lately, i’ve begun to wonder if these ‘features of dreaming that occur while awake’, coupled with muted responses to pain have something to do with my insistence on being stuck. There are things that i just enjoy not getting over. An over-played mixed-tape, mountains of books i have no proper place for, folders full of old writing assignments i received in college, a wine bottle i shared with someone to whom i am attached, rocks my son picks up for me on the street, daffodils, matchboxes, promises.

Forrest Bess, Untitled, 1967

i don’t completely mind the narrative for “stuck.” Somehow, it feels more honest. If we understand ‘performative force’ as the life-altering effect that can result from citations of the past–of stories and memories that actually do something to the present and breathe a modified life into our presumably dead histories, then the unconscious is much more than a tomb. What i like about my narcolepsy is that somehow it feels productive. Is the no-longer-conscious accesible through sleep? Is my nostalgia and desire for people and things that seem to be gone keeping me from waking life?  Am i a ruiner or a sociopath because i am lacking the brain protein that tells me when to quit, or when to stop dreaming? Do you see where i am going with this?