Beyond Measure - Rachel Z. Arndt

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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:

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