Читать книгу Beyond Measure - Rachel Z. Arndt - Страница 8
ОглавлениеI waited in my pajamas—boxers and a T-shirt baggy enough to have wires threaded down the neck and out the bottom. There, they’d connect to a box of terminals, each tiny opening marked with a letter and number, the whole thing very advanced yet also reminiscent of a switchboard or old stereo receiver. I waited for the technician next door in the Electrode Room; I waited on my bed, listening to the muffled conversation between him and my neighbor. I have to hurry, the man explained; my next patient is someone who might have narcolepsy, and she needs to go to sleep soon. I sat on top of the covers reading because under the covers made the pose too familiar, too much like waiting for a man in my own bed.
I had my first sleep study when I was in college: narcolepsy. A couple of years later, in a new city, another: narcolepsy. (Maybe if I say the word enough here it’ll become easier to say out there, where most people don’t know how to react except with Really? and Are you sure? and I have insomnia too.) Now, living in yet another city, my new doctor wanted confirmation that I had narcolepsy, not some other problem. I could have the test—a night and day spent in a sleep lab—“whenever’s convenient,” which was never, but which also happened to be during summer break from grad school, when I could afford to step out of the world for twenty-four hours and into the benevolent but sadistic schedule of a sleep study. In the meantime, my doctor said, I probably shouldn’t drive.
When making the appointment, the receptionist on the phone asked what time I usually go to bed, which would determine when I needed to show up. We try to make things as normal as possible for you, she said, and I didn’t point out—didn’t need to point out—that if it were even remotely similar to normal, I wouldn’t be planning on the phone what time I’d be going to sleep.
I told the woman I usually turn in around ten thirty; arriving at the sleep lab by nine would give me plenty of time, she said.
The cautioned-against drive to the Sleep Disorders Center was ten minutes from my house. It took me three minutes to park, six minutes to walk to the building.
I’m here for a sleep study, I told the intercom.
Who are you? the intercom asked.
I was buzzed in. The room, with its familiar wall-mounted camera, greeted me, and the sleep technician quizzed me using the Epworth Sleepiness Scale. He called me Ma’am. He pulled his jeans at the knees as he sat and asked me how likely (3 = very likely, 0 = very unlikely) I was to fall asleep in certain situations, including, among others, “sitting and reading” (3), “sitting inactive in a public place” (1.5), “lying down to rest in the afternoon when circumstances permit” (3).
Night was seeping in. The sandy day gathered itself in traces, windswept. In the sleep study the real night would arrive, then certain sleep. First, in the ebbing and flowing twilight that holds night from day, there was preparation. The technician asked if I could wait for him to set up someone else’s sensor electrodes before mine.
Alone and unable to focus on my book, I eavesdropped. The technician pontificated about women: Men, he said, either fall asleep or they don’t. There’s no trying to fall asleep for a man, he said. If a man can’t fall asleep within ten minutes of lying down, he’ll get out of bed and leave the bedroom to be productive elsewhere.
Women, on the other hand, lie in bed worrying, he continued. They worry about what they’ll wear the next day and what they’ll pack for their kids’ lunches.
I worried. And while I worried and waited for the technician to glue on my electrodes, I peered from the bed toward where a painting should be if this were a temporary bedroom (i.e., a hotel room). In place of art, a camera. It was no less beautiful than a hotel-room painting, but neither was it more beautiful. In the footage I’d spend 29 percent of the night on my back and 71 percent on my side, all of it in the green of nausea, all of it bulging in surveillance wide-angle.
I appreciated the window in the room, which added some verisimilitude to the experience. Maybe it would be better to rule out possible diagnoses, to confirm that all we could know about my sleepiness was that it was unknowable. Outside, past the concrete courtyard the window framed, there was a world going on. I texted two friends about going to dinner the next night, after the test—my grand return. I’d wear my new black dress. And, for those few hours, I’d ignore the new trouble rising: that a grand return to routine after not quite leaving the routine isn’t grand, and it isn’t really a return.
But this was too much, this thinking about people that led to thinking about what those people might be doing without me and if I was missing something by being here, the center of attention. If I didn’t stop, I wouldn’t be in tip-top shape for sleeping and would fuck up the whole test. So I turned off my phone, tugged at the blinds’ two pull-strings individually until the slats fell parallel to the floor, and took in the scenery of the room: The vinyl chairs, the sagging bed, the noisy pillows—those were also problems. They did not fit into the notion of normalcy. This inside world was proving just as troubling as the outside, and I wondered, before the study even began, how well I’d do at performing something habitual in a new but familiar setting, one uncannily like the other sleep labs in shape and intent but, not yet at least, in results. Can one make a diagnosis based on data gathered from a performance? Summoned by the technician, I got up and followed him into the Electrode Room.
The Electrode Room was cold, and the technician wore latex gloves. Outside stood a sign: “Quiet. Sleep test in progress.” Inside, I got my costume: wires likes marionette strings from the chest and legs, china marker scratched at precise points on my head, a bright red X on each temple. A tube hung from my ears and looped under my nose. By way of small talk, the technician mentioned that he’d just been in Chicago for his aunt’s funeral and, boy, there are just too many traffic lights there. A compressor chugged air against my scalp, solidifying the glue in bursts, the soundscape like a conversation between people who’ve just met.
In bed and ready for the night, I felt my body against layers of blankets and wires—so much opportunity to become tangled. During my last two sleep studies, electrodes often detached during the night. They must be glued well enough to stay put but not so well as to make them permanent.
I waited beneath the minimal buzzing in the room, now ready for sleep.
Can you hear me? came the sleep technician’s voice from somewhere near the camera, beginning the pre-study sensor calibration.
I could hear him, though he couldn’t hear me until he entered and fiddled with something in the Electrode Room.
Can you hear me?
Close your eyes.
Open your eyes.
Look left. Look right.
Without moving your head, look up. Look down.
Blink five times. (I could hear my eyelids creak like hinges.)
Clench your jaw.
Hum.
Flex your feet.
Breathe in. Hold it. Breathe out. Ok, goodnight.
I fell asleep in four minutes. I dreamed I was in a plywood-lined elevator that got stuck oscillating between the twenty-third and twenty-seventh floors until I pulled the stop lever and went plummeting, down, down into an echoey atrium where the elevator car careened into glass walls and sent me, hands outstretched, through open doors into open water. There I swam, electrified by the wires in my hands and the water, naked with an old high school friend, gazed upon by other high school friends, less mortified than I should have been, less mortified than I was when I woke up, ten and a half hours later, to a blinds-drawn sunlight and voice through the intercom: Ma’am, are you awake?
Stay where you are, I’ll be right in, the voice said. Five minutes later, a woman knocked as she was opening the door and asked how I slept—better than normal? I don’t recall her face but I do remember it was vastly older than the face on the ID around her neck: A football pin obscured the word “hospitals,” and below smiled a young woman with bangs. Did she spend all her mornings greeting people? Did she tuck them in at night too?
I told her I slept ok, not as well as normal, that yes, I’d had dreams, that no, I don’t think I woke during the night. She said I’d be taking my first nap in two hours, and until then I could do whatever I wanted besides have caffeine or medication. I wanted both, but to prove I needed stimulants to stay awake, I first had to go without. Thus, two weeks before the study and its wires, I’d stopped taking all my medication. The doctor warned me at least three times that there would be a drug test and if I failed, the whole thing would be for naught. At first I abstained from weed too but it was grad school summer break and the cicadas were loud and what else to do besides sit outside with friends, stoned? Finally I stopped, because smoking made me so excruciatingly tired that the only force that could carry me to bed was the frantic worry of not making it home before sleep hit. I often ran that last block to my house; I knew how small the window of time was before I’d be unable to move through air that thickened like setting cement.
I dazzled myself with tiredness on the second day off stimulants but denied the dazzling, saw no sparkle in the way mornings could induce sleep as much as afternoons. At my summer job in a sandwich shop, I drank as much water as possible so I could go to the fluorescent-drenched bathroom and sit down and rest. There, I’d verify being awake by verifying the terror, the levels of dread of not being asleep. I’d muster the energy to stand back up by finding a sliver of belief that the sleep study would be worth it, that numbers could be replicated even if context couldn’t. Still, I was dubious of the data even before they were tallied.
Five days off stimulants, I walked to the grocery store a mile from my house. Do you need to know how I sweated?—beaded over in pixels of sweat like an enlarged comic-book character, some superhero of repose. Each step felt laced to the sidewalk, and each next step seemed not just out of reach but unimaginable. This is how walking became unfathomable. This is how I realized the stroll to the store was a mistake in both practice and intent.
I considered calling for help. I could call a friend and ask for a ride. I could wait sitting down, ease the weight of my legs, a fractional solution but a solution nevertheless. I had recently read how narcolepsy affects the appetite, now transformed into something ravenous, and lengthens the sense of distance. A ball of mozzarella in my tote bag slapped at my hip. I wished for a Pythagorean shortcut but did not call a friend.
My mom texted later that day and asked, Can’t you just ignore the sleepiness? I knew she meant well. But I still said, No, at this point long past the well-being of wakefulness. I told her the tiredness felt “complete.”
A woman peeled the pads from my legs, leaving ovals of fuzz-covered adhesive. The pads measured leg movements, which could suggest that restlessness was keeping me up and therefore causing my sleepiness during the day. This new doctor seemed to suspect that something along those lines was making me tired. That kind of explanation could be logical and more satisfying, but I doubted it. I knew I mostly slept through the night every night, I knew I often woke in the same position I fell asleep in, sheets still tucked tightly in, hospital corners intact. I could even sleep after drinking espresso—and in fact did, especially during the half year I lived in Barcelona, where I developed a four-espresso-a-day habit that turned into a six-a-day one until it was time to move back to the United States, where espresso is more expensive and less delicious, and where the habit, as is often the case, started to seem like a problem. Nevertheless, I bought a cheap espresso machine, packed it full of grounds a couple times a day, and slept long and often all the while. Then I quit, the first and only time.
The eye pads measured eye movements to pinpoint when I was in dream sleep. The tube under my nose measured breathing to check for sleep apnea, a disorder in which a person stops breathing for seconds or minutes at a time. It’s a not-uncommon ailment.
A year after my sleep study, in the convention hall of the annual Associated Professional Sleep Societies conference, I found rows and rows of sleep-apnea contraptions—masks and tubes and nasal strips, machines that loomed like old pipey vacuum cleaners, as if the problem were a dustball to be sucked up and thrown away. I saw solutions to restless legs syndrome and shift-work disorder. At a giant booth in the middle—with its own extra-plush carpet, a tray of freshly baked cookies on the table, the oven just behind it—lay Xyrem, a.k.a. GHB, a.k.a. the date-rape drug. How it works is mysterious, but it seems to prevent attacks of sleepiness and cataplexy during the day. It’s meant, medicinally and illicitly, to knock someone out. So the company that makes Xyrem adds a foul-tasting liquid and enrolls the patient in what was once called the “Xyrem Success Program.” Side effects include nausea and peeing in the bed.
I first took Xyrem during a winter break from college; I wanted my parents to be there in case something went wrong. My mom watched me prepare the night’s doses: I poured the liquid into two measuring cups that looked like pill bottles and topped both with water. I downed the first dose like a vodka shot, grimaced as after a vodka shot too, got in bed, and waited. I fell asleep fast, as I usually do, slept a dreamless sleep until my alarm went off four hours later, time for the second dose. Another shot thrown back, another grimace, and back into sleeping, this time into the vivid-nightmare-strewn territory that usually dominates my unconscious hours. In the morning I could taste the drug on my retainers, maybe, or maybe I just wanted to taste it to ensure it had really happened—I’d voluntarily taken a date-rape drug, twice. The lack of control while under its effects seemed sickeningly fitting, as if the only way to treat a disorder is with more disorder, entropy against entropy, all control wrested from the patient’s hands and given over to pharmaceuticals that tempt with the sweet waft of warm chocolate chip cookies.
At the convention I passed by booths in search of product demos, less interested in the sales pitches directed at doctors than in the actual sensations: This is what it’s like to have your nostrils pried open and this is what it’s like to wear light-emitting glasses—because how the treatment feels is often as much a part of the overall experience of a disorder as is the disorder itself.
For instance, one way to treat restless legs is by attaching electrodes to them. These pulse the muscles into action, skin twitching above twitching innards, legs tired out by a machine, without any sheet-untucking jiggling.
But do restless legs even exist? And why do they arrive alongside sleep? Sometimes I think it’s a syndrome invented to sell drugs and devices, but then I remind myself there are people who think the same about narcolepsy—that it’s made-up, women’s hysteria, sleepiness diagnosed as disorder to assuage the willpower-related worries of the so-called patient. How accurately can we gauge these subjective complaints?
The answer is sleep studies.
First there was Nyx, the goddess of night, then there were her twin sons, Thanatos, god of death, and Hypnos, god of sleep. Aristotle thought food fumes traveled to the brain and then cooled it when they sank back into the rest of the body, prompting sleep and centuries of minds emptied at night. In the eighteen hundreds, Luigi Rolando removed birds’ cerebral hemispheres and watched the birds fall prey to somnolence. Scientists suggested sleep was a purging of toxic buildup. They assumed that nerves stopped communicating at night. Others wondered if time itself was being purged. Constantin von Economo sliced into the brains of dead people, probing for areas of sleep. Doctors in the 1930s placed electrodes on humans’ scalps; these first modern EEGs measured the brain’s electricity at night, forcing sleep to separate from waking with voltage, and making sleep studies possible.
Still, a problem remained: How can you tell just how sleepy someone is? In 1975, Mary Carskadon and William Dement created the precursor to the solution. They called it the “90-minute day.” Five undergraduate students participated in the experiment, held at the Stanford University Sleep Laboratory. Their normal cycles were fractured: thirty minutes in the dark, trying to sleep, sixty minutes in the light, trying to stay awake. The schedule tricked the subjects into dreaming faster than usual.
Now, in contemporary sleep studies, patients have fewer naps but the same general pattern of a day divided by sleep. From the studies doctors draw brain waves, peaks jutting from valleys like in a skyline silhouette. In these hypnograms, the sleep monolith breaks and reveals its stages, including REM, when what’s supposed to happen is so much and nothing at once—eyes moving as if awake but the body still, paralyzed to stop it from acting out dream-stories. Hence the alternate name, “paradoxical sleep.”
Something was wrong in the way I created that paradox. I only looked like I slept well. Really, I slept incorrectly—in the wrong stages, at the wrong times, and never in any sort of restful way. This is narcolepsy—from narke, “numbness, stupor,” and lepsis, “to seize or grasp, to take hold of.” My new doctor thought this might not be the correct diagnosis. Instead, I might have idiopathic hypersomnia—the first word from idio, “own, personal and distinct,” and pathos, “suffering,” and the second word from the “too much” of hyper and the “sleep” of somnia. Or, as it’s now understood, “unexplained and excessive sleepiness.” The point of this study was to choose between the two. Or to rule one out, to cement the thing that wasn’t and put in its place a diagnosis of uncertainty, a name that’s more a lack than anything else, a name that’s the equivalent of throwing up your hands at the problem and walking away. The ruling out could be endless. And though I worried the results would be the same as before—“the patient’s complaint of excessive daytime sleepiness is not adequately explained by the parameters measured here”—I still had to go through the ceremony of naming. I still had to pretend that it didn’t matter whether the sleep-study room looked like a hotel or not.
In the sleep lab I let myself become an object. Alongside wires my hair sprouted in a mess of stringy strands. I didn’t wash my face when I woke so as not to upset the electrodes on my chin and temples. Why even get dressed only to sleep again? And so I sat in pajamas and a fleece, sat on the vinyl chair and on the vinyl bed, sat among objects, all of them spill-proof—all of them but me, that is, an “I” spilling data or melting into them like snow in the sudden sun of noon.
For the daytime portion of the study, I’d take five twenty-minute naps, spaced two hours apart. After every nap, awoken by a voice on the intercom telling me it had been twenty minutes, I lie-babbled like a person pretending she wasn’t asleep by picking up the conversation where she left off. The problem was I hadn’t left off anywhere; there was no context. There was only the void of meaning imposed by off-white sheets and off-white tables in an off-white room.
The voice would wake me, and the voice would ask if I had slept and if I had dreamed. Every time the answer to both was yes. But the data would show I hadn’t actually entered REM sleep. Why were they testing me? All the questions I’d been asked from the get-go had an air of aggression to them. Had I done something suspicious? Had I mispronounced the name of a drug? I wanted answers as much as they putatively did, so why would I taint the data?
Anyway, altering the body’s data would be tough no matter how much I worried about accidentally tainting it with worry. The body was the source of my measurement; I had to let the body be. But as I gave myself over to the test, I grew suspicious of my own feelings: When should I trust how I feel, and when should I trust how the measurements say I feel? If they’re not the same, what’s wrong, the measurements or my feelings? The sleep study results dictated a certain set of symptoms, and if I didn’t actually experience those symptoms, then something wasn’t right. Logic dictated it must be the measurements: When shown the test results, I’d find that they didn’t match the previous two studies. Nor did they match my life. But they are correct, the doctor would say, because we followed the protocol exactly. What was I doing wrong? I’d ask. I would blame myself, I would find in the gaps between sleep-study versions the fallibility of measurement, the problem of trying to turn subjective experience objective with numbers. But those gaps would shrink with time as I convinced myself I was wrong: The numbers must be right because they’re numbers, because they’re without interpretation and therefore without the uncertainty caused by bias, environment, and self-reflection. I was those numbers, and no more. But without interpretation, could those numbers mean much, if anything at all?
Finally, the last nap, which went like all the other naps: asleep in three or four minutes; stage 1 sleep the whole time but a sleep still full of dreams, dreams of school rooms too small to sit in, of an accidental gun purchase, of parents cloned and turned evil, of playing a 4/4 beat on the drums; sleeves bunched up when I woke, Infinite Jest on the bed next to me; a cleared-throat alarm clock through the intercom that, like me, turned mechanical by the separation of sound and body—her body, her voice; my body, my data.
Then body and voice came together and the woman was in my room a quick knock later. How’d you sleep? she asked.
Just fine, I said.
Good, she said, and began peeling away the rest of my electrodes, easing them out of their glue beds, out of my hair—her fingers broad but delicate. Some women like to wash their hair twice, she said, and I wondered about those women who didn’t, and all the men.
When I got home, I washed my hair twice, and like some women, I put a small dollop of cream in it for smoothing. Yes, I could be relative to other people, not just to myself. Or I could tell myself I might be. Really, I was alone—alone taking my first pill in two weeks, alone waiting for my data to arrive and to tell me whether I’d changed over those in-between-studies years, because for measurements to change, the source must too. Otherwise, how can we ever trust numbers in the first place? And there, alone, I hoped desperately that I’d stayed exactly the same, because even a solid diagnosis can make measurements worthwhile and trustworthy, can make them suggest something within gone wrong. But the lack of a name, or a name that stands in for a lack, would mean I was somehow incapable of producing meaningful measurements. What’s the point of data if they don’t provide certainty, if they don’t stabilize? It wasn’t, in fact, better to rule something out. I wanted the numbers to say “narcolepsy,” because narcolepsy came from somewhere. Narcolepsy was the result of specific data. Narcolepsy was meaning. Idiopathic hypersomnia wasn’t even recognized by my word-processing program. It was a failure of quantification—measurement’s inability to verify or to repeat—and if what ailed me was uncertain and unverifiable, and if what ailed me came from numbers I produced, then I was uncertain and unverifiable too.
Waiting for my hair to dry, I stared at myself in the mirror. My dress’ defined waist and back zipper made me feel like I’d accomplished something. But had I? I stared a little more, let my gaze grow unfocused as the sun setting cut a last triangle of light across my mirror. Had I?
