Like many wars, Lacey’s began with a single shot.
In Atlanta, Georgia, in October 2009, Lacey Brady hopped onto her doctor’s exam table to receive a routine vaccination. The vaccination should have provoked her immune system to create defenses against the weakened virus, but Lacey’s immune system misfired, targetin g part of her brain and destroying thousands of irreplaceable neurons in the process.
A high school basketball star and small-town social butterfly, Lacey never seemed short on energy. But, that fall day, as she walked out of the doctor’s office and into the parking lot, Lacey felt overcome with sleepiness. She climbed into her mother’s car and, moments later, surrendered to the waves of exhaustion.
The battle in her body was over, but Lacey’s fight was just beginning. As a result of her body’s misdirected immune response, Lacey had lost 90 percent of her body’s only producers of a protein vital to the brain’s sleep cycle regulation. In a single friendly-fire massacre, Lacey had become narcoleptic.
***
Two weeks later and 400 miles north of Atlanta, the series of events that would eventually link me to Lacey began with a crash. On a November night in 2009, in my senior year of high school, I was snaking through the back roads of my hometown in a red pickup. The orange harvest moon had lulled the Virginia countryside into a hazy stillness. My mind grew sluggish in the thick silence. The double yellow lines before my headlights blurred, then dimmed.
A scream jolted me from my stupor. As my tires screeched against the asphalt, the truck bucked and spasmed beneath me, the gnashing of metal grating my ears.
As quickly as the chaos had begun, my world righted itself. Adrenaline pumping, I peered through my splintered windshield. The metal hood was accordioned against a scarred tree trunk. Warm wetness seeped through my shirt. I looked down at my left arm. From the raw red pulp coating my forearm jutted a naked, white bone.
Months later, my wounds were close to healing, but I was no closer to understanding what had caused the crash. As time passed I learned to recount a less uncertain version of events to those who asked: “A deer ran into the road.”
There was no deer. That much I knew. But the mental fogginess that had come over me just before the crash had blurred out any other clue as why I had lost control. In the year before my accident, these foggy spells had begun happening regularly, pitching me headfirst into brief but disturbing dreams in the middle of the day. I’d nod off for a few seconds in class and find myself transported into a nightmarish Salvador Dali painting, my teacher’s body contorting at the blackboard, or tongues of flame lapping at the room’s walls. These visions would flit away as quickly as they set in.
The exhaustion and hallucinations followed me to college. My first few weeks at Yale were a dizzying blur. Did I want to hear a senator talk about student debt or eat free pizza while learning about how to travel to Istanbul for free? Should I join a comedy troupe or learn how to code my own website?
I filled my schedule to the brim, determined to take advantage of Yale’s many possibilities. But by the end of freshman year, my fatigue had become debilitating. Because I could not stay alert at night, I began waking up hours before dawn to study, chugging three, four, five cups of coffee at a time.
After years of negative mono tests and normal blood work, exhaustion had become a normal part of life. In the winter of my sophomore year, a doctor finally referred me to a sleep study. A few months later, a letter arrived:
Dear Ms. Earnest:
Your sleep test results indicate that you suffer from narcolepsy.
***
My fatigue and disturbing hallucinations were not imaginary. I wasn’t crazy: I was narcoleptic.
My exhaustion finally had a name, which meant that I could learn more. I learned that I was missing a protein vital to maintaining the sleep cycle, which caused my brain to struggle to regulate when — or how often — I fell asleep. My daytime hallucinations, I found out, were actually slivers of a dream sandwiched in between periods of consciousness. The reason these hallucinations felt so real is because I sometimes wouldn’t even be aware that I’d fallen asleep.
As I gained a better understanding of my strange affliction, I began to realize just how little others knew about it.
A few days after I received my diagnosis, I was studying with a classmate in a dining hall when I began to doze off. Anxious to explain my apparent inattention, I told him that I had narcolepsy.
“Haha — that thing where you fall asleep all the time?” he laughed. “You’re kidding!”
His reaction was like a slap across the face. Of all the responses I’d feared — pity, discomfort, skepticism — I had never considered that I might be mocked.
On the chance that my classmate’s reaction was abnormal, I tried again — this time, reaching out to a close friend. In response, I received a link to a YouTube video of narcoleptic goats collapsing (one person on the comment board had posted, “I could watch these goobers all day!”).
Narcolepsy is an incurable disorder as common as Parkinson’s and as debilitating as epilepsy. But I began to notice that, whether in the media or in everyday conversation, references to narcolepsy would only come up when it was part of a joke. Even my favorite television series Arrested Development made a good laugh off of a narcoleptic character who, as a stripper, always fell asleep before managing to finish her act. I began to wonder privately about others with narcolepsy — if they, too, felt trapped in the punch line of what everybody else saw as cause for laughter.
I couldn’t stop society from ridiculing narcolepsy, but that didn’t mean I had to expose myself to the laughter. I decided to stop sharing my diagnosis, and, as I completed my sophomore and junior year at Yale, I waited for time to lessen the sting of feeling misunderstood.
A few weeks into my senior year at Yale, my mother called to suggest that I take a weekend away from school to fly 1,000 miles to the Narcolepsy Network’s Annual Conference in Atlanta, Georgia. My reaction over the phone was immediate:
“I’m not going to some pity party.”
But after I hung up, my certainty wavered. For the past two years, the enigma of narcolepsy’s humor had inhabited my mind like an unwanted houseguest. I wondered if Atlanta could offer some answers.
I called my mom back. “OK,” I said. “I’ll go.”
***
When I first met Lacey in October of 2013, she was sitting at the center of a gaggle of girls in the wallpapered lobby of the Buckhead Intercontinental Hotel in Atlanta. All the girls were wearing the same name tag that I was, which meant that they, too, had come here for the narcolepsy conference.
Wearing a flowered sundress and nursing a Red Bull, Lacey, a 19-year-old, looked as relaxed as someone entertaining in her living room. I, on the other hand, remained glued to the periphery of the lobby grasping my suitcase, still bundled in my wooly Connecticut wardrobe. Suddenly shy, I felt as if I were approaching the lunch table of a high school clique. Lacey caught my gaze from across the room and smiled. “Hello,” she called out, gesturing for me to join her group, “Is this your first year?”
Lacey, I learned upon joining the girls’ conversation, hadn’t always been so self-assured. When I asked about her reasons for attending the conference each year, Lacey described a lonely search for a supportive community.
Before being diagnosed, Lacey’s sudden, inexplicable symptoms alienated her from the rest of her small Georgia hometown. After narcolepsy’s onset, Lacey, then 15 years old, began regularly collapsing at school. Her parents had a doctor administer a drug test, even though Lacey promised she wasn’t using drugs. But, unable to explain her behavior any other way, her parents continued to test her routinely.
Although she didn’t know it at the time, Lacey, like 70 percent of all narcoleptics, was experiencing cataplexy: sudden muscle weakness triggered by strong emotion. But because the root cause of cataplexy doesn’t present any visible indication of illness, it wasn’t difficult for others to mistake the clumsiness, slurring, immobility, and loss of muscle tone symptomatic of cataplexy as a signs of drug or alcohol use.
Many of Lacey’s friends began to think she was on drugs while at school. Thinking her behavior was funny, some of her best friends began recording and circulating videos of her collapsing or falling asleep in class. Other students began spreading rumors that Lacey was infected with a contagious disease.
The gossip blazed through her tiny town. “Everyone knows you and everything about you,” Lacey said. “I just stayed home and didn’t talk to anyone freshman year of high school.” After suffering a cataplexy attack on the court, Lacey had to quit basketball. For her entire life, Lacey had known almost everyone in her community. But, upon losing her ability to exercise or regularly attend school, the only company Lacey had left was her unanswered questions.
***
Though the general public knows little about narcolepsy, the medical community is not exactly light years ahead. Narcolepsy is under-researched and under-diagnosed. It’s not hard to see why. In four years’ worth of curriculum, the average medical school allots two hours to talk about sleep disorders. Even for narcoleptics lucky enough to stumble across the right diagnosis, answers to fundamental questions about their disorder remain elusive.
Evidence strongly suggests that, at the onset of narcolepsy, a misdirected autoimmune response kills around 90 percent of the neurons charged with making an important sleep regulation protein. But little is known about why this haywire immune response occurs, why it causes cataplexy, or if it can be prevented.
On the first day of the conference, I decided to attend a luncheon during which dozens of sleep specialists would present new advances in sleep medicine.
Inside the grand ballroom of the hotel, I grabbed lunch from the buffet before I spotted Lacey. She was sitting at a table next to an athletic teenage girl named Danielle, another conference regular who experiences severe cataplexy attacks. The attacks, Danielle said as we started to eat, paralyze her on the ground for minutes at a time. When I asked her how she copes with such debilitating attacks, she told me that she always travels with a service dog trained to sense an oncoming collapse. Thrusting out her wrist, she showed me her other precaution, an engraved medical ID bracelet.
Danielle Brooks
Narcolepsy & Cataplexy
Google For Symptoms
Onstage, the doctor giving the presentation was gesturing at charts and bullet points on a PowerPoint. Dressed in a starchy white coat, he looked like he had just emerged from the lab. In thin white letters in a small font, he presented science’s latest breakthrough for narcolepsy:
Further genotypes/sequencing showed that the DW2 haplotype was characterized as HLA DRB1*1501 DQA1*0102. DQB1*0602 was found in 90 percent of cases.
His presentation prompted more questions than it answered. I thought again about the possible environmental or genetic causes of narcolepsy and wondered, as I looked at the girls sitting next to me, if a cure might exist within our lifetime.
“The best way you can contribute to research,” the doctor said, coming to the last slide of his presentation as I shoveled flavorless pasta salad into my mouth, “is to talk to your families and to get them to donate your brain.”
***
For the average narcoleptic, diagnosis takes two decades. Lacey was lucky in one respect: because of the severity of her cataplexy, she was diagnosed within three months. Without such obvious symptoms, she could have lived under a cloud of fatigue for most of her life.
Most people with narcolepsy struggle to convey the experience of pathological exhaustion to not only doctors, but also loved ones. Without the visible symptoms of severe cataplexy, it can be hard for people to accept as an illness something no objective measure can describe: tiredness.
Because my exhaustion had been so hard to verbalize, even to those closest to me, I had stopped talking about it at all. But, after lunch, I ended up slipping through a set of paneled doors flanked by a sign that said: Support Group.
Inside the room, I joined the others in the circle of folding chairs. A conference veteran named Dustin had been sharing: his wife had narcolepsy, but he did not. Initially, his wife’s only symptom was excessive sleepiness. But recently, severe cataplexy had begun to prevent her from driving or working. Despite the added financial and emotional strain, Dustin credited his wife’s cataplexy attacks with saving his marriage. “I used to think she was just lazy, and it drove a stake in our relationship,” Dustin said, shaking his head “I actually didn’t believe her until the cataplexy hit this year. Now I get it. It’s real.”
Even when confronted with a conclusive medical diagnosis, some people remain unable, or unwilling, to recognize narcolepsy as a legitimate health problem. Lacey’s father, she shared with the group, is among them. “I honestly think he will always be in denial, because it happened so fast,” Lacey said. “I went from normal —” Lacey paused, snapping her fingers in the air “— to not.” Lacey said that her father believes she can manage her symptoms with willpower: that, if only she tried hard enough, Lacey could stay awake.
Narcolepsy’s stigma has touched my family, too. When I went home for winter break in my junior year at Yale, my dad took me to dinner at our usual spot, a hole-in-the-wall Chinese restaurant. Post-diagnosis, I had become obsessed with figuring out why I had gotten narcolepsy. Because some theories posited a genetic cause, I had combed through my family tree looking for answers. Finding nothing, I, again, asked my father if he knew of any one in the family who could have had narcolepsy.
“Focus on how to move forward,” my dad said. “What does obsessing over this do for you?”
I bit my cheek, unable to explain how often I thought about the origins of my narcolepsy. “If I have no basis for genetic predisposition, I can then consider other… ” I trailed off, noting a strange expression flit across my father’s face.
“So, someone did have it.” My voice fell flat, turning my question into a statement. My dad fiddled with his chopsticks.
“Your grandfather,” he said. “But he made your grandmother promise not to tell anyone.” My grandfather had died three years earlier, just months before I had fallen asleep behind the wheel and crashed my truck.
“It was a different time,” my father said. “When your grandfather served in World War II, falling asleep on watch was punishable by death.” My grandfather lived for seven decades before being diagnosed. But even afterwards, his view of sleep, it seemed, had remained what it was to him during wartime: a liability.
***
It was true: my grandfather was of a different generation. But I had met so many young people at the conference who, like my grandfather, feared being viewed as lazy or incompetent. This negative perception is enough to prevent some narcoleptics from seeking treatment.
On my last night in Atlanta, I met Jackie, a 25-year-old conference rookie, in the bar at the front of the hotel. Jackie diagnosed herself with narcolepsy when she was just 15. But for the next eight years, she lived in denial.
“I didn’t want to say I have narcolepsy,” she said. “The little bit that people know about narcolepsy is that it has to do with sleeping all the time — that, if you have it, you’re lazy.”
So when people asked about her sleep attacks or cataplexy, Jackie invented her own fictitious disorder: “laugh apnea.” Without medication, Jackie was constantly dozing off. “My dad would just say ‘Jackie, you need to drink more coffee!’”
Looking back, Jackie feels angry that, for nearly a decade, her fear of seeming lazy stopped her from getting help. “Now that I’m on meds, it’s crazy to me that I did it,” Jackie said, thinking about the eight years she spent in denial. “Looking back, I feel like I was never really awake.”
Every young person I met at the conference had, at one point or another, struggled to distinguish narcolepsy’s fatigue from laziness. Sean, a 28-year-old from D.C., had been diagnosed only a month before the conference. Suffering from symptoms of narcolepsy from a young age, Sean always struggled to stay alert to do his class work. To stay awake, Sean made his room freezing cold and shone a bright lamp into his eyes. “Studying,” he said sagely, “is just about making yourself as miserable as possible.”
As a child, he was misdiagnosed with ADHD and multiple personality disorder. “People were convinced I was this lazy asshole with ADHD,” Sean said.
After being diagnosed, Sean decided to take a medical semester off from his Ph.D. program. When I spoke with him, he was uncertain about returning to finish his degree “Why finish my Ph.D. — so I can make $42,000 as an academic? Getting tenure as someone with narcolepsy? That’s not gonna happen.”
Matt, a 26-year-old, had a similar experience. For seven years, he tried to stay alert enough in class to earn his associate’s degree. He finally gave up. Eventually, Matt was diagnosed with both narcolepsy and sleep apnea, a condition in which breathing stops periodically during sleep. “I didn’t know what narcolepsy was,” he explained, “I thought I was lazy.”
***
Something in the stories of Matt, Sean, and Jackie resonated with me. No one at Yale had ever called me lazy, but, sometimes, I couldn’t help but feel like I was lagging behind. Each night, after nodding off at the library table for the umpteenth time, I would gather my books and leave my friends, who’d keep working for hours after I’d gone to sleep.
Productivity is Yale’s true patron saint, and that makes sleep a natural enemy. When facing unmanageable demands, rather than sacrificing academic or extracurricular responsibilities, most Yalies simply cut back on sleep. But I could not. My 8-hour sleep schedule and daily napping felt almost blasphemous. I felt guilty for squandering so many of the day’s hours unconscious. I felt that my inability to stay awake indicated that I wasn’t as disciplined or hard working as everyone else. Every day, emails, posters, and passing conversations fueled a constant and disquieting sense that my time was running out.
When I was a freshman, General Stanley McChrystal came to Yale as a professor. When the news of his arrival broke, I remember hearing a variant of the same, bizarre fact every time his name arose in a conversation “— I hear he doesn’t really sleep or eat.”
Intrigued, I searched the Internet for details about McChrystal and came across an online video that elaborated on the general’s stringent sleeping habits. “Here’s a story that’s inspired many people,” a moderator says to McChrystal in the video. “You sleep less than four hours a day, run over seven miles a day, and eat only one meal a day.” Beaming at McChrystal, the moderator asks, “Is this urban legend?”
The general shakes his head no, affirming his self-discipline, intense drive — sheer superhuman-ness. When the moderator asks McChrystal why other people can’t keep up with his grueling, sleepless schedule, the General replies with militant consiseness: “You’re weak.”
Only one in 2,000 people have narcolepsy. But at Yale, concealing my pathological exhaustion had always been easy. Dozing off in class never gave me away — looking around the lecture hall, everyone else was, too.
***
The next morning, sitting in a plane bound for Connecticut, I thought about the community I was leaving on the ground and the work awaiting me at school. Not yet back to Yale, I somehow already felt behind. I opened my backpack to pull out my usual study materials: Pen, paper, pills. Pausing, I stared at my pillbox in the middle of the plastic tray table.
“Are those all your meds?” Lacey had asked me I pulled out the little tin at the conference. I told her that they were.
“What?” Lacey had laughed. “That couldn’t fit my pills for a day!”
Adderall, Venlafaxine, Nuvigil, Xyrem, Topamax. To me, Lacey’s daily medications sounded like the names of planets in a sci-fi movie. Her dependence on so many potent drugs had disturbed me. “I take medicine to stay awake,” she had said, “and I take medicine to fall asleep.” But, considering her daily arsenal of medications, I wondered: compared to the general population, was her behavior really so outrageous?
Yale’s work-sleep culture might be extreme, but most people I had ever known artificially controlled their wakefulness in some way. I had relatives who needed uppers to get up in the morning and downers to lie down at night. Friends who used Adderall to study and Red Bull to party. A classmate who’d regularly throw down a pot of coffee and a couple cans of Pabst Blue Ribbon in quick succession — a recipe for alert studying and an easy sleep. The more I thought about it, the only real difference between Lacey’s daily chemical cocktail and that of everybody else I knew was that Lacey’s was prescribed by a doctor.
I hated taking my medications. Coffee, which I had previously loved drinking, had become just another one of my daily tonics. Contriving my body’s rhythms according to the day’s workload or social calendar felt so unnatural. From a 9 a.m. coffee run until 5 o’clock happy hour, everyone around me was also trying to defy evolution, adapting their bodies to fit their environment.
More than ever before, sleep has become a choice. Consumers can browse the aisle of any corner convenience store and purchase their desired level of wakefulness as casually as they would a pack of gum. In a world of commoditized sleep, the idea of someone helpless to control their own consciousness seems absurd.
Laughable, almost.
***
Nothing had changed at Yale in the two days I was in Atlanta. But, as I settled back into my old routines, everything felt different.
All over the country, there were people who shared my inexplicable challenges and frustrations. I knew their names and faces. They were studying, working, raising families. Keeping meds in their desks at work and watching movies with all the lights left on bright. For the rest of senior year, the knowledge of our parallel lives filled me with a strange new peace.
Freshly graduated, I now live on a leafy street in a strange new city. As I begin this next phase of life, society’s derision of narcolepsy does not embitter me the way it once did. Narcolepsy had stormed into my life suddenly and destructively, and laughter had prodded at the wound. Narcolepsy, I felt, had robbed me of so much.
And it is true: narcolepsy has stolen from me. It has taken innumerable moments and memories. In the five years since narcolepsy’s onset, I have fallen asleep at weddings, funerals, graduations (my own included), first dates, and taxicabs in six different countries. Narcolepsy has struck at inconvenient, sometimes dangerous, times: while I was showering, taking the SAT, driving, interviewing for my first job, and once, in a feat I had previously thought possible for only horses, while standing up.
But, in a small way, narcolepsy has given, too. Unlike most people I know, I cannot buy alertness. But, consequently, the chance to be wholly present in a passing moment has become infinitely more precious. I find now that, when narcolepsy’s fog clears, the countless beauties of everyday life are not lost on me.
I cannot ensure the feeling of being truly awake. Like perfect weather, it is a blessing and, when I feel it, the here and now fills me up with wonder.