Harper recently added weekday happy hours to the group’s agenda, encouraging members to unwind after work and share their experiences living with narcolepsy over a beer or two. Spending time with several New York narcoleptics offers a lesson in the unique ways they cope with this condition.

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“I’ve never met anyone else with narcolepsy,” Grant Billingsley announced at 12th Street Ale House in the East Village during NYZ Narcoleptics’ first organized happy hour in late November 2013. Diagnosed with narcolepsy at age 17, Billingsley, now 33, has understood the disorder almost exclusively through his own experiences.

On this Tuesday night at the back of the nearly empty, dimly-lit bar, he chatted and laughed with Harper, taking sips of lager during brief lulls in conversation. Billingsley recounted how he sometimes stopped walking after he told a joke because emotions, such as laughter, might spur a cataplectic episode, much like the one Becker experienced during his lunch break. Billingsley’s sister, whom he brought along hoping the meeting would help her better understand his narcolepsy, responded with “I always wondered why you did that!” Harper listened intently as Billingsley explained his past and why this born-and-raised Texan now found himself in New York City.

In December 1997, after a series of dangerous incidents of falling asleep while driving short distances in Texas, Billingsley finally went to neurologist Dr. David Green. During the consultation, Green asked his patient to walk around the office while he told a joke. At the punch line, Billingsley couldn’t help but laugh, his legs simultaneously buckling and upper body folding forward like a rag doll. Green explained that this was cataplexy. He surmised Billingsley had narcolepsy because cataplexy pretty much only occurs concurrently with the disorder (about 50 percent of narcoleptics also have cataplexy). Green scheduled a Multiple Sleep Latency Test (MSLT) to be certain. The test results confirmed his suspicion.

Shortly after his diagnosis, Billingsley began the psychostimulant Ritalin, but he only took it for a few months because it irritated his stomach. Next he tried Adderall, which, as he says, gave him “ridiculous dry mouth,” but helped in the beginning to fight off the urge to keep sleeping. After four years on Adderall, he switched to Provigil, a prescription drug previously used to keep soldiers awake. Today, the drug is taken to quell excessive daytime sleepiness (EDS), the most common symptom of narcolepsy.

In July 2013, Billingsley moved to New York City. Although eager to fully immerse himself into the art scene, he took a job as an art installer to pay for his apartment in Soho, delivering paintings for celebrities like Charlize Theron and Steven Spielberg. On his first day, Billingsley fell asleep several times in the back of the truck and, not wanting others to dismiss him as lazy, told his moving partners that he was narcoleptic.

“It’s difficult for narcoleptics to decide whether to be honest or not about their narcolepsy,” Billingsley says. But in this case, he made the right choice. His partners understood he would never do any of the driving, but still put in the time and effort like everyone else. Nothing changed, except now they call him Sleeping Beauty, a nickname Billingsley says he doesn’t mind.

After our first interaction at the bar, I asked Billingsley if we could meet again for a one-on-one interview. He agreed, but jokingly said he might not seem as energetic and awake because I would no longer be a new, interesting face. Billingsley’s biggest complaint is the time the disorder takes away from him, but he finds that New York City is the perfect place for a narcoleptic artist. If he sleeps through an art show or lecture, he knows a similar event will take place in another few weeks. Plus, the stimulating lights and sounds of the city help keep him awake.

Billingsley no longer takes any medication, but is considering trying a new drug once he has a set schedule. There’s now a movement to use Xyrem as a first-line drug to treat narcolepsy whether or not the patient has cataplexy. Xyrem treats all the symptoms of narcolepsy, from daytime sleepiness and cataplexy to sleep paralysis and hypnagogic hallucinations—visual, auditory, or tactile visions that occur during the transition from wakefulness to sleep. However, because of its potency, ingestion of this powerful medication that has been used illegally as a date rape drug, may result in severe side effects such as seizures, difficulty breathing, loss of consciousness, and even death. Xyrem is also extremely expensive without health insurance and only available through certain doctors because it’s an “orphan drug,” designed for a relatively small number of patients whose production cost outweighs the number of people using it. Depending on the dosage, a month’s supply of Xyrem can cost anywhere between $4,628 and $9,256.

Aside from the expense, Xyrem and other drugs prescribed to treat the disorder are a source of frustration for narcoleptics because their efficacy differs for each patient. A great deal of experimentation usually occurs before a patient finds the right combination of drugs. It’s also possible for some to experience side effects so severe that their only option is to stay away from all medication and try to find other ways to cope with their narcolepsy.

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For James Deufel, 21, the best medication is physical activity.

“My bike, to be honest, works better than the Ritalin or Provigil. As soon as I get off the bike, that’s when I feel my most well-rested,” says Deufel.

Weather permitting, Deufel bikes to work each day.

The subway is a viable alternative and much safer than driving a car in the city’s stop-and-go traffic, but he has overslept his stop in the past. If he does take the subway, Deufel makes sure to stay standing.

At 13, Deufel suffered from a severe concussion after a classmate threw an ice ball at his face, and for several weeks afterwards he slept constantly. His mother, who also has narcolepsy, saw that his symptoms correlated with her own and suggested he might have developed the condition after the traumatic brain injury.

Because autoimmune disorders can be hereditary, there are some cases in which several family members have narcolepsy. “I am lucky enough to have a mother who also has it,” Deufel says—lucky here meaning that he was quickly diagnosed because his mother recognized her child’s symptoms and could sympathize with his daily struggles. The disorder doesn’t cause such intense feelings of isolation for Deufel like for others because he has a strong support system in his family and friends.

However, to control the physical symptoms, at 15, Deufel began taking Ritalin. He had to wait until he was 18 before switching to Provigil, a drug not approved for children. Both stimulants worked for a few years, but stopped once he built up a tolerance. Unable to concentrate or stay awake in college, Deufel dropped out and moved into an apartment in Bushwick with his childhood friends who make sure he’s awake for his shifts at Trader Joe's. He works in the liquor department, carrying cases of wine and beer, never allowing himself to stop and sit down because he knows that as soon as he does, he will fall asleep. Deufel sees one positive aspect of the disorder: It has driven a strong work ethic. He views sleep as an addiction, so he fights it as best as he can, works hard, and never stops moving.

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To understand why narcoleptics are always so tired it helps to compare their sleep cycles to a person with regular sleep patterns.

A normal sleeper alternates between non-rapid eye movement (NREM) and rapid eye movement (REM) that together make up one full sleep cycle usually lasting 100 to 110 minutes. This cycle repeats until the person wakes up. When a person begins to fall asleep, she enters stage one of NREM sleep, a period of light sleep. A few minutes later she enters stage two and begins to disengage from her surroundings. During this stage, breathing and heart rate become regulated and body temperature drops. Stages three and four of NREM are the deepest and most restorative periods of sleep when muscles relax and hormones, such as growth hormone (crucial for development), are released. Each stage of NREM lasts between five and 15 minutes.

At anywhere between 80 to 100 minutes, a normal sleeper goes into REM sleep, when the eyes quickly move back and forth, dreams occur, and the body goes into sleep paralysis, meaning the muscles are completely relaxed and turned off. Paralysis occurs so the sleeper does not act out her dreams. In a person who experiences regular sleep patterns, the brain is in NREM sleep for 75 percent and REM sleep for 25 percent of the night.

Narcoleptics, on the other hand, normally enter REM sleep first and it takes them just a few minutes to do so. Then they quickly leave this stage. Their stage one sleep is longer than a normal sleeper’s, while stages three and four are much shorter. This is why they never receive the necessary amount of restorative sleep needed to feel well-rested. While a normal sleeper’s sleep cycle usually lasts a consecutive eight hours at night, a narcoleptic’s is sporadically spread out throughout all 24 hours of the day, and they fall in and out of fragmented sleep, which explains why narcoleptics commonly experience excessive daytime sleepiness. However, at bedtime, they may struggle to fall and stay asleep, so many also suffer from insomnia or continuously wake up over the course of the night.

While common, these symptoms are not universal. Each case of narcolepsy is unique, which is why it can be difficult to diagnose and fully comprehend.

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At 34, Mee Warren is a highly successful trader at Two Sigma Investments in Soho. She is also narcoleptic. It is her ambition, much like James Deufel’s, that has gotten her to where she is today. “It’s do or die. I’ve been independent since I was 18. If I don’t work, I don’t eat,” she says.

Warren enjoys her job as a trader and the intense, stimulating environment helps her stay awake. Her narcolepsy is manageable, and she is able to live a fairly normal, if still exhausting, life with the help of a Ritalin in the morning and another dose during the day if needed. Warren also finds support and inspiration as a board member of the Narcolepsy Network. However, prior to her diagnosis at 18, she struggled to try and make sense of the strange, uncontrollable things happening to her body.

Sleep paralysis, another symptom of narcolepsy, occurs upon wakening or falling asleep. A normal sleeper enters paralysis while in REM sleep, but because narcoleptics have irregular sleep-wake cycles, their brain sometimes cannot distinguish between being awake versus dreaming. The brain still thinks it’s in REM and the body is awake, but the former cannot send the latter messages to signal movement. Thus, paralysis occurs.

Warren recalls the sheer terror she felt when she couldn’t move upon awakening one morning.