I

t didn’t happen during his appearances on Stephen Colbert’s show or his walk down the red carpet in April as one of Time’s 100 most influential people of 2017. It has happened during meetings, seminars, and panel appearances from Beijing to Boston: Renowned biologist George Church nodded off.

It’s no secret that he has narcolepsy, the condition defined by sudden bouts of sleep. He lists it as part of his personal history, intriguing his fans enough that “How does George Church manage his narcolepsy?” is a question on Quora, a question-and-answer website. But because he has never discussed it in depth, the question has gone unanswered.

STAT is happy to step into the breach: He doesn’t eat from 6 a.m. to 6 p.m., and stands whenever possible. “I have to constantly shift my weight and balance,” stimulating the nervous system in a way that prevents nodding off, the 6-foot-5 Church said.

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He hates appearing on panels, where he frequently dozes for a couple of minutes or more. Even asleep, though, he can hear his name spoken and so wakes up, usually able to answer whatever question has just come his way without asking that it be repeated.

Church stood throughout an interview last week in his office at Harvard Medical School — where his lab’s past and current projects range from using DNA for data storage to resurrecting the wooly mammoth, from creating mini-brains on plates to doing a gut renovation of pig genomes so their organs might be transplantable into people. For the first time, he opened up about his journey with narcolepsy: when he realized he had it, how he copes, why he’s avoided the standard drugs, the virtues of parking brakes, what happened when he and his daughter (who also has narcolepsy) both fell asleep while speaking with her teacher … and how his narcolepsy underlies his creativity and scientific achievements.

Church said “almost all” of his visionary ideas and scientific solutions have come while he was either asleep or quasi-asleep, sometimes dreaming, at the beginning or end of a narcoleptic nap. Such as? The breakthrough during graduate school that ushered in “next gen” genome sequencing, a fast and cheap way to “read” DNA. “Writing genomes,” or constructing them from off-the-shelf molecules as a way to improve on what nature came up with. Innovations in editing genomes.

These brainstorms, and more, occurred while he was “either daydreaming or night dreaming or in that period when I’m really refreshed right afterward,” said Church, who will be 63 in August. “It took me until I was 50 or 60 years old” to realize that narcolepsy “is a feature, not a bug.”

George Church
Church, during an interview in his lab at Harvard Medical School in Boston, stands whenever possible to keep from falling asleep. Kayana Szymczak for STAT

His condition has persuaded Church of the benefits of, even the need for, neurodiversity, meaning brains that work differently from most others. The world needs people with high-functioning autism and obsessive-compulsive disorder and attention deficit disorder and, yes, narcolepsy, he has come to believe.

While the content of his dreams is exceptional, so is their frequency. People who have narcolepsy tend to slip quickly into REM sleep, the phase when dreams occur, rather than experiencing the four phases that usually precede it. As a result, they can dream very quickly, even in five-minute narcoleptic naps and during that hazy borderland between wakefulness and sleep.

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That makes it more likely that waking thoughts — perhaps, how can DNA be read faster and cheaper? — will carry into sleep and shape the content of dreams, producing vivid reveries that have some connection to waking thoughts. Research has found connections between dreaming and creativity, including that paying attention to the former can increase the latter, as a 2016 study showed. In the most famous example, German chemist August Kekulé fell asleep while thinking about benzene one day in 1865, dreamed of a snake biting its own tail, and thus discovered the molecule’s ring structure, a seminal advance in organic chemistry.

Church doesn’t remember narcoleptic episodes during his childhood in Florida but, in retrospect, is pretty sure he had them in ninth grade, at a private school in Massachusetts, when he kept nodding off in the math class he so relished he would excitedly race through a semester’s worth of homework in a few weeks. If not even the thrills of algebra could keep him awake, he realized, something was probably going on beyond the standard soporific tendencies of sleep-deprived (or bored) students.

“I would always fall asleep in class, so eventually [the math teacher] would just relieve me of going to class, and said why don’t you go [learn] it on your own,” Church recalled. He did.

That spared him merciless teasing. “Any mental deviation from the norm was considered fair game” by fellow students, he said. “There were some kids with relatively high functioning autism who would be made fun of, so I tended to stay very quiet. I tried to blend in and not let people know I was different.”

At Duke University, he saw many fellow undergraduates falling asleep in lectures. “I didn’t realize there was anything special,” Church said about his tendency to suddenly nod off. “I would look around and see somebody else falling asleep, and I figured, well, it must be normal.”

But he was the one who attracted chalk missiles. “My teachers would notice” his shut-eye, he said. “To them I was an outlier. I had the head of the department at Duke throwing chalk at me. That should have been a tip-off; I didn’t see him throwing chalk at anybody else.”

“I think there is a lot left to be learned [about the genetics of narcolepsy], but I am not quite so self-absorbed that I’m studying it yet.”

George Church

He would even fall asleep, for a few minutes at a time, during standardized tests. Still, it never occurred to him that he had narcolepsy, which affects an estimated 1 in 2,000 to 4,000 people and typically begins in the teens or early 20s. Although it seems hard to miss, he acknowledged, “it’s tolerable.”

He drove for years “and shouldn’t have,” Church said. “I’d do things like pull up to a stoplight and if I didn’t know how long it was going to take I’d put the parking brake on” so as not to roll forward if he drowsed off. “With hindsight, that is very irresponsible. … Once I recognized it, I stopped driving.”

That recognition came only after he became an assistant professor at Harvard in 1986 and he and his wife, Harvard biologist Ting Wu, had a daughter, now 26. The little girl, too, developed narcolepsy, forcing Church to acknowledge his own. (The condition has a genetic component, and by one estimate, the child of someone with narcolepsy has 40 times the risk of also developing it compared to the general population.)

Narcolepsy seldom strikes when he’s lecturing or answering questions, as during his Colbert appearances. Being in the audience is trickier. His condition “makes it hard to ask questions at the end of seminars,” he said. “There are people who ask these impressive questions, but I’m not one. I always have this lingering doubt that even if I was asleep for just two minutes it’s possible my insightful question was answered and I’ll look foolish. I go back to my preteen years and trying to blend in, so I’m the guy who sits in the back, not saying anything. I would say that’s probably one of the biggest disadvantages.”

Narcoleptic episodes tend to happen when he is sitting, but he almost never feels one coming on. “Sometimes I won’t even close my eyes, and sometimes I’ll keep talking — sleep-talking that people have told me sometimes makes sense and sometimes doesn’t,” Church said. “The thing is, if you don’t know me, if you just know by reputation I say crazy stuff” such as proposing that the wooly mammoth be resurrected via modern genetics, “you don’t know if you’re talking to the real me” or the sleep-talking, quasi-unconscious Church.

The clues are subtle: His head stays upright, but his eyelids drop to half mast.

He doesn’t recall ever sleep-talking on a panel, but has with his family. Once, he and Wu had been discussing BglII, an enzyme that cuts DNA, and then moved on to a “conversation about some everyday thing.” He nodded off and sleep-talked, “That shouldn’t happen with begel two.’’

Yes, even asleep Church has insights into biochemistry. “That’s one of our favorites,” he said with a smile.

He sits when social convention mandates it, such as at meals, but finds frequent excuses to get up. Caffeine doesn’t help. During a parent-teacher conference at his daughter’s high school, he and she both fell asleep during (wait for it) a discussion of her condition.

“They didn’t consider that evidence — they thought maybe we were faking it,” Church recalled more in sorrow than in anger. Nor did the school immediately accept the doctor’s letter explaining that a medical condition makes his daughter fall asleep unexpectedly. “They said it’s not a thing, we’ve never had a letter from a doctor saying someone has narcolepsy, therefore your daughter can’t possibly have it,” Church said. “And for that matter, you can’t either.”

Scientists have traced a form of narcolepsy caused by overstimulation to a genetic variant found in mice, Dobermans, and humans. Church has famously made his genome sequence public, and he doesn’t have that DNA variant (one involved in immune function). Studies suggest that his form of narcolepsy is not the result of a single mutation but of three that form a “haplotype,” or group of genetic variants that tend to be inherited together and seem to trigger autoimmunity. In such people, the immune system attacks brain cells that produce or respond to orexin, a neuropeptide responsible for wakefulness.

“I think there is a lot left to be learned [about the genetics of narcolepsy], but I am not quite so self-absorbed that I’m studying it yet,” Church said.

He is, however, thinking more and more about the huge, and healthy, variation in how human brains function. The neurodiversity movement argues that brains that differ from the norm are not necessarily disordered and in need of treatment.

He hasn’t tried any of the drugs typically prescribed to treat narcolepsy. Stimulants such as modafinil help patients work harder but seem to reduce creativity (his daughter reported). “I decided I already work hard enough, and creativity is everything for me,” Church said.

“I think there are enough good aspects of [narcolepsy] that I don’t really feel like treating it,” he added. “For example, I took the red eye to Copenhagen and I basically slept from take-off to landing, without even putting my seat back, in economy class.”

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Or when his computer acts up, he takes it as a sign from the universe to shut down not only the machine but also himself, by sitting or lying down. “Then, when I wake up, I’ll have the solution to either the scientific problem or the computer problem,” he said.

Church suspects society could benefit from more neurodiversity, not less, which is what happens when people take medications to make their brains less OCD, less ADHD, or less autistic.

“I think we probably should be embracing [people with those conditions] a whole lot more than we are right now,” Church said. “My guess is we need more high-functioning autistics or more OCDs, especially if they can tweak it a little bit, [saying,] ‘Now I need to be sociable so let’s turn [the brain’s autistic traits] down a bit,’ or, ‘Now I’m going to have 12 hours uninterrupted [for focusing on a challenging problem] so let’s crank it full on.’”

He finds inspiration in the many websites that list accomplished people who have had dyslexia, ADHD, OCD, and other forms of neurodiversity. “I look at them and say that’s really cool,” he said. That and other evidence suggest that “if you’re different on any axis you’ve got a slight edge in some circumstance. Being different at all allows you to think out of the box. The kind of difference you have maybe determines what direction you’ll take out of the box.”

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  • I don’t know if this holds for people with narcolepsy, but I’ve taken stimulants for ADHD and found some real differences. If you’ve had a bad experience with one, maybe another will work differently and better. For instance, Adderall seemed to work, but I’d get something like a tantrum once in a while. Dexedrine doesn’t work quite as well, but is more comfortable. Ritalin made my heart rate go way up. And so on. Trying a different stimulant or a different dose may provide different results.

    I don’t have narcolepsy, but I used to nod off in early afternoon meetings if they discussed anything I wasn’t concerned with. Not with a stimulant, though.

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