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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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  • This is amazing! As a fellow narcoleptic, who’s been diagnosed w/ADHD & PTSD as well, and who’s had a lifelong desire to unlock the mysteries of the human mind AND brain (despite lack of access to quality education), I have so many questions/ideas and am eager to learn more.

  • Thank you Mr Church for raising awareness of this condition! I also find that my narcolepsy helps with problem solving – I am often able to figure out problems in my sleep. However, I could not imagine coping without medication. I wouldn’t be able to shower, prepare breakfast or get to work safely, let alone hold down an important job like the one described above. It’s great that Mr Church has found ways to mitigate his symptoms but for other people narcolepsy can be very disabling even with treatment and adaptations. The understanding of others goes a long way, however – thank you again for highlighting this disease.

    • Sleepyhead, to your point about medication: I’ve been on disability since Nov. ’08- less than 3yrs after initial diagnosis. My Narcolepsy would’ve probably continued to go undiagnosed had it not been for my seeking psychiatric treatment at 18 for whatever was “wrong” w/me: despite an IQ >170 & having always tested off the charts on statewide standardized tests, I ended up w/a GED at 17 & was honestly afraid to attempt college. The irony is that I began falling asleep in class as early as 1st grade, but was considered ‘advanced’ so my teachers assumed I was just “bored.”

      Fast forward 20 or so years and you find me at a point that I was so over medicated, I was having boughts w/apparent psychosis. After my last hospitalization in 3/15, I decided to end the cycle once & for all by going off all prescription meds and relying solely on therapy, introspection and lifestyle adjustments to manage any symptoms as they occur. It has taken my brain 2+ years to cleanse itself of enough toxins and repair/restore to a point where I’m (hopefully!) finally ready to attempt to return to school and seek my potential.

      You are correct in that not everyone can necessarily function sans meds. But I believe we will find, in the next few years of research, that more and more people are higher-functioning w/o chemical alteration than with it.

    • Hi Christy! Taking meds definitely comes at a cost. I think my memory is much worse with them and I feel rather “stupid”, as if my brain doesn’t work as well as before. I would prefer not to take stimulants and to find some kind of work-around, because I definitely feel more myself without them. Although I can keep a better routine on meds, I still can’t cook safely beyond the basics or drive, so they definitely have their limits. I don’t think I could cope without cataplexy medication though. Before I started my cataplexy meds I had to be supervised all the time, whereas now I have more independence. I’ve been looking into low carb/ketogenic diet as I’ve heard that can help some people with our condition. I wish you well and I hope you accomplish all your plans!

  • Very interesting article. Chronic anemia is accompanied by an overwhelming *desire* to sleep. I wonder if there’s a connection between the anemia and narcolepsy.

    • As a narcoleptic who has anaemia – the tiredness is awful in both, but feels quite different. Also treating the anaemia doesn’t affect the narcolepsy side of things, sadly! Wishing you well!

  • Apologies for the delay in continuing my story but here goes. Bearing in mind I was diagnosed 34 years ago much has changed. For the first 10 years I was put on a series of drugs including amphetamine. I had various side effects from them all. Then I was asked if I would take part in a drug trial for Modafinil otherwise known as Provigil. I agreed, was admitted to a sleep clinic, and taken off all medication. Not something I would recommend although there was a funny side to it. My cataplexy is quite severe and my body goes into shutdown so that I hit the floor. Every time this happened there had to be an entry into the accident book. On day 3 the consultant asked if I would agree to them making an entry only if I hurt myself as there were already 40 or so ‘episodes’ logged Needless to say my response was to make it 41 before I was able to say yes.
    As far as my family were concerned I don’t think my two children really understood why I could be O.K. one minute and ‘out of it’ the next. I missed things like their school plays, sports matches and meetings at their schools, something I found equally hard to accept as you don’t get those moments again. My husband found it very difficult to understand how I could fall asleep while we were having sex. I’ll leave you to work that out. It can’t have been easy for him to see me nodding off at the dinner table or when we were in company, and it didn’t seem to make it any easier when I said I couldn’t help it. It is a very difficult condition to explain to people as I go from being alert to being in a deep sleep for no apparent reason.
    Now my cataplexy is not as severe on medication but still a problem. My sense of humour is definitely a disadvantage. For example I couldn’t watch a recording of Robin Williams in one sitting. I’d have to keep rewinding.
    But, I’ve travelled extensively including 5 months and 4 months visiting India. Apart from a scare when it seemed as though I might have malaria, (I didn’t), I was able to keep my condition under control by increasing my medication when I needed to.
    Now I am busy as a Patient Leader in the UK campaigning for patient and public involvement (PPI) and co-production. Believe it or not in 2017 the NHS still hasn’t got the message that it should be mandatory to work with the people who use the services!
    I’m talking at 8 national conferences this year and will keep speaking out until clinicians get the message and there’s a culture shift.
    So if you have narcolepsy one or two it’s a nuisance but not the end of the world and you can control it. Just monitor your viewing on you tube and watch Robin Williams in small doses.

  • Seeing narcolepsy described as “a feature, not a bug” caught my attention quickly. As a person with type 2 narcolepsy I am not sure I would describe it that way for myself. I agree with both Julie and Carol, there is a spectrum when it comes to symptoms and treatments. What works for one person may not help another. I think it is amazing that Church is able to use lifestyle changes alone to manage his narcolepsy symptoms, but for many of us that is not an option. Personally, I use lifestyle changes in addition to taking two medications three times a day to control my symptoms. It is not a perfect solution, but since there is no cure for narcolepsy it is the best one I have. These changes and medications have been life changing for me. They make it possible for me to go to work, go back to school, keep up with family, and the normal everyday things in life. The biggest benefit for me is having enough energy to play with my young son—that is priceless.
    My heart broke a little when I read “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”. As a mom I can’t imagine having a teacher say anything even close to that about a child’s illness. Sadly as a person with narcolepsy I can relate to the lack of understanding because so many people have no clue what narcolepsy really is. That is one of the reasons I love anything that helps raise awareness. Project Sleep is an amazing resource and their Narcolepsy: Not Alone campaign raises awareness while letting people with narcolepsy see that they are not alone (which is super important since it can feel very isolating at times). Hopefully with more awareness will come more understanding and other parents will not have to go through that same situation.

  • A doctor once diagnosed my condition as narcolepsy and prescribed a mix of amphetamines and barbiturates. That made me feel energetic and dynamic, but it was kind of a delusion. My work included so many mistakes that much of it had to be done over when my brain was functioning better. I decided to live with the condition instead of with the chemicals.

  • I was fine for 38 years until as a passenger in a car crash I sustained a fractured skull, brain haemorrhage and was in a coma for 10 days. When I regained consciousness,over the following few weeks I felt something was wrong but put it down to after effects of the injury. It was when I went for the follow up appointment and explained what had been happening that narcolepsy and cataplexy was diagnosed a) from my explanation and b) from tests. My symptoms are severe and without medication I could not function safely. I agree with Julie that the condition covers a wide spectrum. As with many conditions, what works for one person doesn’t work for another. Some have all of the symptoms, some don’t. Cataplexy and sleep paralysis are both scary. Excessive daytime sleepiness is annoying as I hate missing out on things. When I speak at conferences I say that I have good reason to ‘doze off’ but unless there are other people with narcolepsy in my audience I don’t want to see anyone else doing it.
    I’ve lived with it for 34 years and now I live on my own , my husband died when I was 42, my two children are in their late 40s with their own families (my 5 teenage grandsons included). I manage my condition with modafinil for the narcolepsy and venlafaxine for the cataplexy. But it hasn’t been plain sailing. I’ll come to that tomorrow when I finish this. One thing I must say now is that reading what Julie has achieved in getting narcolepsy recognised has to be applauded. I can’t thank you enough. Now I’m going to say Good Night from the UK as the election results will be coming up later and I’m going to a friend’s house to watch them. Until tomorrow ….

  • For pple with narcolepsy – please know you are not alone and there are resources and treatments available that can make a huge difference to improve quality of life. Please see real-life faces and stories at narcolepsynotalone.com!

    As a person with type 1 narcolepsy with cataplexy and author of “Wide Awake and Dreaming: A Memoir of Narcolepsy”, thank you to George Church for opening up about his experience with type 2 narcolepsy without cataplexy.

    Please note that there is a spectrum, and it sounds like Church manages his type 2 narcolepsy without cataplexy without treatment which is wonderful, but getting treatment is a huge part of many people’s journey. In my experience living with type 1, narcolepsy with cataplexy, I take treatment twice a night and once a day, which is not a cure, but has allowed me to come back to life, to drive, to lift a cloud of suffocating brain fog, reduce terrifying hallucinations and paralysis surrounding sleep and most importantly, improve my cataplexy so I can stand, walk and even run marathons.

    Fascinating, narcolepsy is actually not defined as sudden bouts of sleepiness. Narcolepsy is defined as a neurological disorder of the sleep/wake cycle with five major symptoms, the most defining of which are excissive daytime sleepiness and cataplexy- body paralysis with emotions while conscious. There are two types of narcolepsy – type 1 narcolepsy with cataplexy and type 2 narcolepsy without cataplexy. Type 1 is caused by the loss of hypocretin/orexin described in this article. The cause(s) of Church’s type 2 narcolepsy without cataplexy is not well understood.

    Excessive daytime sleepiness can be very invisible and for me, I very much can sense it coming on over 15-20 minutes. For me, it is often not as obvious nodding off to sleep. Instead, for me, I thought I was losing my will power, my inability to concentrate and succeed in law school. It took me years to realize something was actually wrong and I never thought I could have narcolepsy because I knew only misperceptions of narcolepsy as falling asleep randomly.

    Cataplexy can be quite scary and with this symptom, my knees buckle, jaw slackens, head falls forward with laughter and annoyance – a form of body paralysis while wide awake.

    The part of this article about getting schools to understand resonated with me, this is a huge part of why I am so passionate about raising awareness through Project Sleep, the Jack & Julie Narcolepsy Scholarship and the Narcolepsy: Not Alone campaign.

    More research needs to be done and thankfully researchers like Dr Thomas Scammell at Harvard, Dr Emmanuel Mignot at Stanford and Dr David Rye at Emory understand the urgency of this because many people’s narcolepsy presents differently than Church’s. While neurodiversiry is SO important, understanding the biology and developing better treatments is also so important.

    • Julie,
      Every time I read an article or response written by you, I feel more and more inspired. Our type 1 narcolepsy experiences are nothing short of identical. I am finally able to return to higher education classes and with the help of my physicians and medications, there is no doubt that I will not only succeed this time, but I will excel!!
      Thank you for your inspiration,
      Katy Bachman
      Single mom of 2 beautiful busy teenage girls, full-time college student, full-time medical laboratory assistant, and not afraid to let the world know that I have Narcolepsy with cataplexy and I am no longer ashamed of it!

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