Snooze

by Michael McGirr

  Elizabeth Hickey became aware of the symptoms of narcolepsy following a bout of glandular fever when she was sixteen years of age. But her struggles with the condition go back even further. At school, she had trouble concentrating and was often in trouble with teachers, who liked her to sit near the front of the class so that they could keep an eye on her. This old-fashioned approach to discipline may have some valid basis: by creating mild stress for the pupil, a teacher may be helping them release enough adrenalin to stay awake. Elizabeth’s behavior might now be described as attention-deficit/hyperactivity disorder (ADHD); she believes her brain was doing gymnastics to compensate for poor sleep and to keep her awake during the day.

  “I am just so thankful that nobody in my family treated me like I was a bad person, so my self-esteem never suffered,” she says. “Looking back, that was a huge positive.”

  Elizabeth is middle-aged now. Though she still has narcolepsy, the drug that enables her to function is Ritalin—the same drug that can arouse controversy for its use in treating children with ADHD. There’s a theory that ADHD affects poor sleepers who get through the day by having numerous very short “micro-sleeps,” which may last only seconds but which are long enough to rupture concentration and reduce the world to fragments. There are others who’d say that poor sleep is a symptom rather than a cause of ADHD.

  Elizabeth showed all the classic signs of narcolepsy. At the age of eleven, she surprised herself by being able to swim across a pool. She was delighted by her achievement and the emotion triggered a cataplectic episode as a result of which she lost the ability to move her limbs, and but for the vigilance of a friend who fished her out, she would have drowned. At the age of sixteen, she had a summer holiday job in a doctor’s office where she saw a man whose arm had been nearly severed in a car accident. The shock sent her into a paralysis that lasted five or six hours.

  Years later, she found herself as the mother of twins living in Toowoomba in regional Queensland and struggling to cope with profound exhaustion. She was so sleepy all the time that she found it hard to function, but she was inclined to attribute this to the demands of having two babies in the house. One day, some friends from Brisbane arrived unexpectedly on her doorstep. The sheer delight of seeing them once again activated her cataplexy and she fell to the floor.

  Cataplexy is just one of a suite of symptoms. As a girl, Elizabeth had an extraordinary number of imaginary friends, each of which was absolutely real to her, and now wonders if this was a result of narcoleptic hallucination. Even as an adult, Elizabeth suffered with hallucinations; she can well recall driving with her children in the backseat and experiencing terrifying mirages of oncoming trucks. She has experienced sleep paralysis and, with that, the most frightening dreams.

  “I dreamt that things were eating me up. That I was being interfered with,” she says. “It was horrible. The dreams would come with a real, physical pain.”

  On top of that, Elizabeth would just fall asleep. Anywhere at all. At any time. She had to give up the piano because she used to just fall asleep at the keyboard.

  Elizabeth’s suffering was intensified by the inability of anyone, including herself, to recognize the problem for what it was. When she was thirty-one, one of her sisters-in-law suggested that Elizabeth’s inability to stay awake might be due to more than just her little twins. She got a referral to a neurologist, but the very visit to the surgery caused sufficient adrenalin to be released that she was more awake than she had been for ages and the doctor ended up wondering why she had come to see him. Elizabeth says she then went into denial for a further eight years. Overall, it took twenty-five years of groping in the dark, of feeling like she was living underwater, until, at the age of forty-one, another doctor was able to scratch the word narcolepsy into her file.

  Narcolepsy is, admittedly, not always an easy diagnosis to make and not one to reach in a hurry. One of the tools in diagnosis is the multiple sleep latency test (MSLT), which needs to be performed in a sleep lab during the day. In this test, the patient is wired up to an electroencephalograph (EEG) and asked to fall asleep, a number of times, during a period in which the person would otherwise be up and about. The test can see how readily the patient falls asleep, a phenomenon that is called sleep latency, a simple but effective measure of sleepiness and hence an important clue to sleep deprivation. The EEG can also see if REM sleep jumps the queue and pushes its way into the initial stages of sleep, causing no end of trouble. But the MSLT is fallible, partly because it takes place in such odd conditions for sleep. It is possible to do well on the test and still have narcolepsy. It is equally possible to have early-onset REM and not have narcolepsy.

  For Elizabeth, family and community have been significant in enabling her to live more comfortably with the condition; for her, community has meant church community as well as the community of other people forced to share their lives with narcolpesy. Both diet and medication have also played a major role. For various reasons, weight gain is a factor in a number of sleep disorders.

  Current thinking is inclined to attribute narcolepsy to low levels of hormones called orexins (also called hypocretins), which are produced by a part of the brain called the hypothalamus, an amazing little gadget that is a bit like the brain’s brain. It regulates sleep, appetite, and body temperature, three aspects of our lives that are closely related. Disturb one and the chances are you will disturb the other. Orexin levels are often measured by a spinal tap, an intrusive procedure that can have slight risks of its own. Certain drugs that can help with narcolepsy, such as modafinil, have been found to stir the orexins. But Elizabeth uses large amounts of Ritalin and has long argued that the maximum recommended doses of this drug are nowhere near sufficient for her needs. “If I don’t take enough,” she says, “I may as well not take any.”

  Ritalin is not a substance to be toyed with, and Elizabeth is well aware that there is a list of drugs, including some antidepressants, with which it has a dysfunctional relationship. Nevertheless, although Ritalin is often used to keep people awake, for her it means she can get into the depths of sleep without having to wade through shoals of hallucination. At the end of the day, she finds it is important she gets to bed before the effects of the drug have worn off. Otherwise, she can end up spending several hours in the kitchen, pottering around with no idea what she is doing or why. This is called automatic behavior, a form of waking sleepfulness that can beset anybody but is part of a range of sleeping disorders, especially narcolepsy. At this stage, only further medication will get Elizabeth to bed. She needs to wake up enough in order to sleep.

  It’s been a long journey for Elizabeth and thousands like her. She wanted to be a doctor and did well enough at school to qualify to go to medical school. But in the final years of high school, she was already falling asleep so constantly that she doubted she could cope. She took a degree in pure mathematics and psychology instead.

  Still, self-doubt has plagued her nearly as intensely as her nightmares. “My journey has been one of self-acceptance,” she says. “Before I was properly diagnosed, narcolepsy just took me over and engulfed me. There was nothing of me left. Then I met people with the same disorder who were really learning to live their lives. Now I can see myself as a person who just happens to have a disorder. I am a person. Narcolepsy is a disorder. There’s a difference.”

  The middle of the night is a desert in which mirages appear. One of the mirages is TV.

  When Jacob and Clare were little, we used to wonder how such small people could make so much noise. We tried a process called controlled crying (often known as Ferberizing), which basically means that you don’t pick up the child as soon as they start to cry but wait for a while—even a long while—in the hope that they will learn to comfort and settle themselves.

  Controlled crying is not the right name for such uncontrolled misery. We started out with two babies crying. Before long, this had increased to two babies, a toddler, and two adults crying. The only positive is that the sight of
mom and dad sitting on the living room floor and sobbing fit to break the drought did, at one point, create a thirty-second hiatus. Perhaps the little ones were simply stunned.

  Sometimes we found ourselves perched in front of the screen in the small hours of the night looking at a TV wasteland that made the drought-stricken properties of some of our neighbors seem lush. Jenny would strap herself into a device called a twin feeding pillow, and Jacob and Clare would then be fitted around her like lifeboats on the side of a ship. I would sulk in the background looking like a martyr but not helping very much, except to offer a cup of tea, which I knew Jenny would refuse because the twin feeding pillow could become pretty choppy and we didn’t want to risk hot tea spilling onto the lifeboats.

  It was during this time that I became acquainted with the spectacle known as the late-night infomercial.

  Advertisers know all about the quick hit, the sudden jolt that can crumple the soul on impact. Apparently, all you have to do is look at a billboard for three seconds or an image in a magazine for five seconds and then you’re hooked. But there is a special skill in the long, slow campaigns of attrition, the ones that grind you down over a grueling thirty minutes on TV, a period so long that you need to have advertisements within the advertisement to break it up. The ads within the ad are for the same product but are made to look and sound a bit different. You think it’s a respite, but the toll-free number at the end is just the same as the one that has been burning into your skull for the last quarter of an hour.

  In our late-night sessions, Jenny and I saw an infomercial for an acne treatment that was so desperate for material it included an interview with a pimple, which vowed and swore that nothing brought fear to its heart more than the name of the stuff we were being asked to buy. We also saw an advertisement for a pillow that seemed to go out of its way to be as boring as possible because its basic inducement went something like, “Wouldn’t you rather be tucked up in bed being entertained by your own dreams than listening to this drivel?” The pillow, we were told, was allergy-free and guaranteed to help in recovery from a long list of medical conditions, which, in a way, was a legitimate line of argument because it’s hard to think of any medical condition that is not helped by a good night’s sleep.

  The pillows were sold as a pair. They had speakers inside, so you and your beloved could listen to music of which some sultry examples were supplied. Or, it was suggested, you could deal once and for all with the snoring of your partner by listening to recordings of the sound of the sea or of birds or of rain pattering gently on a tin roof, all of which were available on CD from the same toll-free number. I wondered aloud if a CD of falling rain might be a nice Christmas present for our drought-affected neighbors.

  One night after Clare was sick, she was up for a middle-of-the-night feeding. She hadn’t been eating much, so we were glad that now—at five past three in the morning—something was beginning to go into her belly. Our DVD player, which sat under the TV, displayed the time in green, so we could watch the minutes tick past as, for half an hour, somebody tried to sell us a set of knives.

  These knives could do anything, it seemed. In half an hour, you don’t just get to see them slip through ripe tomatoes and frozen steak. We saw them make light work of leather, small branches, and a phone directory (although it was never explained why anyone would ever need a kitchen knife to deal with these aspects of reality). Then the big promise: in a minute, we would get to see the knife cut through a tin can.

  “Couldn’t a can opener do the job?” I asked aloud.

  Clare was still feeding.

  Before we could see the trick with the can, we were told to get a pencil to write down the toll-free number. We were also advised to have our credit cards ready. The TV had assumed we were now under a spell. We would do whatever it asked.

  We saw the knife chew through a tin of soup whose contents spilled onto the demonstration bench.

  “That wouldn’t happen with a can opener,” I said. “With a can opener, you need to keep the can upright.”

  Jenny ignored me, her attention on Clare.

  Next, the knives went out on the streets, which seemed to me a risky thing to do. The proud demonstrator approached strangers with a can of beans and a knife and let them try for themselves. (I can’t help but worry that people have died making these advertisements.) Male and female, young and old, the passersby were all duly impressed. One of them said that his grandfather used to open tins of beans with a rifle, so perhaps the knives were a step toward a more peaceful world. Never did anybody mention the fact that a can opener might achieve the same end.

  A bit of color was returning to Clare’s cheeks.

  “It won’t be long before she’s ready for baked beans,” I said.

  Jenny looked at me with concern, worried that I was about to pick up the phone.

  “Don’t worry,” I said. “I won’t be buying knives. We already have a can opener.”

  Suddenly, the TV played its trump card. It said that if you rang now, there were people waiting to talk to you. It didn’t say they would take your money and send you knives that you may not need. It didn’t say that the number to call just happened to be the same number you call if you wanted acne stuff or pillows or, God knows, pogo sticks or treadmills or CDs of the greatest-ever country hits, although they never say what country. The promise it made was that, if you rang now, you wouldn’t be speaking to a machine. You would be chatting with a real person. By now it was obvious that there are people so desperate for company in the middle of the night that they will buy pillows, knives, and acne stuff just to hear a friendly voice.

  Insomnia is a lonely place. In the middle of the night, people can be as vulnerable as a sick baby. And there are others who are happy to pick over their bones.

  “Clare’s almost finished,” said Jenny. “She’s falling asleep. Look.”

  I was distracted now by all the free stuff that came with the knives. I was starting to change my mind. Maybe this wasn’t such a bad deal after all. If you bought the knives, you got a whole battery of kitchen gadgets as well.

  “Hey,” I said. “You get a wall-mounted can opener as well.”

  At that moment, Clare vomited all over her mother. Half an hour’s work was now all over the sofa.

  There is a whole lexicon of words for nighttime fears.

  Here are a few:

  Clinophobia: fear of going to bed

  Eosophobia: fear of dawn

  Hypnophobia: fear of sleep

  Insomniphobia: fear of not sleeping

  Noctiphobia: fear of the night

  Nyctohylophobia: fear of forests at night

  Oneirophobia: fear of dreams

  Oneirogmophobia: fear of wet dreams

  Optophobia: fear of opening your eyes

  Siderophobia: fear of stars

  Somniphobia: fear of sleep

  There are plenty of us who hold our fears tight, cuddle up with them, take them to bed with us. In some ways, the disrupted sleep of the world is a reflection of the levels of anxiety people take to bed with them.

  One of the less commonly acknowledged resources for improving sleep (and relieving anxiety) is the conscious practice of surrender or letting go. There used to be an old word for this. It was forgiveness. It is another lost art. It can be a difficult medicine that leads to improved health.

  There is a wonderful sequence toward the end of Homer’s Iliad, an epic about the Trojan war. The Iliad is so distinct from The Odyssey that scholars debate whether or not they could come from the same source. These works were formed over centuries, although one devotee of Homer, Adam Nicolson, has pointed out that however much they vary in style they are held together by a guiding vision:

  Homer reeks of long use. His wisdom, his presiding, god-like presence over the tales he tells, is the product of deep retrospect, not immediate reportage. His poetry … is also driven by the demands of grief, a clamouring and desperate anxiety about the nature of existence and the pains of mortali
ty.

  Homer, whoever or whatever he may have been, created works that were centuries old before even Socrates started teasing his fellow citizens of Athens. But they have an understanding of humanity that keeps them well and truly alive.

  Near the finale of The Iliad, the Greeks have been camped out for ten years, and the Trojans have spent the same time stuck behind walls. Eventually, Achilles, the Greek hero, does battle with Hector, the son of Troy’s King Priam. Achilles kills Hector and decides to drag his body around and around the walled city to taunt the Trojans. He does this for days on end. Priam does not sleep during all this time. He stands on the battlements of Troy, keeping watch over the degradation of the body of his beloved son. He is exhausted in every way.

  Then a curious thing happens. Priam steps down from the regal trappings of his position to assume an unfamiliar role, that of a simple father. He leaves a role and becomes a human being, making his way to the tent of mighty Achilles to ask for the body of his son. He expects to be killed. But Priam has not reckoned on the fact that the whole world is now tired of conflict and aggression. It is heartily sick of the macho posturing and muscle flexing of men. It needs something different, and humility is suddenly powerful.