People with a rare sleep disorder called idiopathic hypersomnia can sleep for days at a time and still wake to sluggish brains and bodies. In fact, hypersomniacs often take extreme measures just to get out of bed, such as rigging up alarm clocks on wheels that scream and whirr across the floor or buying products that release 113-decibel beeps and trigger vibrations beneath the mattress. Flumazenil, a drug normally used to counteract potent sedatives, is helping some people with this condition get their lives back, but the drug is unapproved for hypersomnia and not all patients have access.
Science journalist Virginia Hughes, now science editor at BuzzFeed News, immersed herself in the lives of the self-dubbed “sleepyheads,” for the Matter story “Wake No More,” published on January 26, 2015. Sleepyheads might not make the liveliest subjects, but Hughes delivers a compelling narrative of complicated science and of people like Anna Sumner and Lloyd Johnson, whose lives have been destroyed by a condition—sleep—that sustains us all. Here, Hughes tells TON editor-at-large Jeanne Erdmann the story behind the story. (This interview has been edited for length and clarity.)
The Matter story originated with a piece you wrote for The Last Word on Nothing in 2012. In that piece, titled “Re-Awakenings,” you wrote about a woman with hypersomnia named Anna Sumner. How did the LWON post come about?
This one found me. A PIO that I know from Emory gave me a heads-up a few weeks before a paper came out in Science Translational Medicine and told me that Anna, the main patient in the paper, was going to be in Africa around the time the embargo lifted. I was excited about that because I knew she wasn’t going to be around for interviews with other reporters when they got the embargoed paper. On our first call we talked for an hour and a half and she was amazing. Anna had this story of being lost to sleep and having her whole world ruined and her law career at risk, but Flumazenil turned her life around. This was a story you don’t hear very often.
At first I didn’t intend for it to go on LWON. I tried pitching it to a few places but nobody was interested. [Sometimes] you feel an emotion on an interview with somebody, and after talking to Anna I had this feeling it was a really good story. Because of the blog, I could write it when the embargo lifted—I didn’t need to find a publisher. The story came out on Thanksgiving Day, which I was worried about because I thought no one would read it because they were all eating. But the blog post got a lot of attention, and the researchers at Emory were excited by the narrative. I hadn’t had a ton of experience with narrative features and it was fun to have something unedited make a splash like that.
How did you turn the LWON post into a longer narrative for Matter?
If I hadn’t written the blog post I never would have done this as long-form because I don’t think I would have been able to convince an editor to [let me] go see a bunch of sleepy people. About a year after the story ran on LWON, the main researcher, David Rye, wrote to me and said, “I wanted to let you know that the patients have built up this huge community online and they’re going to meet in Atlanta at an airport hotel, and you can come if you want.” That’s when I pitched [the story] to my editor at Matter, Jim Giles [who is no longer with the publication]. The Matter editors had read the blog post and it was kind of a neat situation because they knew the science and knew that there was a mystery story there. I figured that by going to the patient meeting in Atlanta I would be able to tell the story again. But I thought it would be the same story again, or maybe an update.
So I went to the conference, and I met the sleepyheads—that’s what they call themselves. The patients invited me to these Facebook groups. There were a lot of posts about their families or their doctors not believing them; how hard it is not to have a diagnosis but to know that you are sick and have no one else recognize that except for people in the online community.
Anna Sumner was the main subject of the LWON story, but not of the Matter piece. Why did you decide to make Lloyd Johnson the central character in the longer story?
In my first version for Matter, I told the story chronologically and started with Anna as the first act. And then after thinking about it and talking with my editor, we decided there should be one character whose arc the reader follows through the whole story and we asked whether Anna could be that whole character. I decided that Anna really couldn’t carry the whole piece because her story ends when she got Flumazenil, around 2009, and she has been fine since then. She has a life now, and has not been a huge part of the social online group.
So I started to think about Lloyd. He’s a really charismatic guy, definitely the leader of the group, had been very vocal on Facebook and YouTube, and I was pretty sure he’d be willing to open up to me. I had also already heard some pretty dramatic parts to his story, including a point at Christmastime when he wanted to commit suicide but his mom talked him out of it. The more I thought about it, the more I knew he was my story.
If he was going to be my main character, then this story should be about him, his struggles. Before the Atlanta conference, I had learned a little bit about Lloyd through Dr. Rye, who said, “you should meet this Australian guy. He’s made all of these YouTube videos.” Lloyd was the main leader at the conference, everybody knew who he was, and he moderated all of the sessions. While I was there, Dr. Rye invited me to his house along with Anna and Lloyd, and we had a long chat. I got the full story of how Lloyd had heard about the [Flumazenil] research. Then over the next six months Lloyd and I talked or Skyped once or twice a month. I got to know him pretty well—his journey on this drug and his ups and downs within the community. The other thing about Lloyd that turned out to be crazy interesting is that he went to such lengths to get this drug.
Did you consider other potential protagonists besides Lloyd and Anna?
I thought about Dr. Rye because he is this renegade doctor who is very passionate and very emotional, and he has an interesting backstory. He was one of the main guys who identified restless leg as a real syndrome, and he also has restless leg. He’s very charismatic and he felt like a genuinely invested, amazing doctor. He cried at this conference. And he gave me a lot of access as well. But to me, it’s hard to justify writing about a condition and not having someone with that condition at the heart of the story.
There was this other patient mentioned briefly in the story: Jonas, a 20-year-old French kid. He had an amazing story too, but he’s never tried the drug, so he wouldn’t have worked. Lloyd was the obvious choice.
Your story contains a lot of rich detail about earlier periods in Lloyd’s life. How did you get that?
I talked to his mom twice by Skype; she lives in Australia. Lloyd had this long medical history, which started when he was a kid. He and his sister had terrible hip problems and needed surgery. Luckily his mother kept diaries of Lloyd’s sickness early on, and she sent me those notes from her journals, which helped a lot.
Lloyd was also great because he’s so computer savvy. He sent me Facebook conversations from when he was in Thailand and had a motorcycle accident, probably because of his sleepiness. He remembered the accident but not every detail. But on the day after, he had a Facebook conversation with a friend about the whole accident in a lot of detail, and he sent me that conversation. Again that was lucky. Also, Lloyd’s computer and filing system are very organized, he can bring up photos in an instant, and he helped me recreate the accident. In a follow-up call I was trying to fill in details with what happened, he brought up the Google Maps satellite view and got the exact stretch of road and sent me what it looked like.
Also, Facebook groups are searchable, so I went online and a bunch of the story about Lloyd came directly from what he posted to Facebook.
What aspect of reporting and writing the story was most challenging?
The hard part for me is that it was not very dramatic. Lloyd’s story has a lot of dramatic moments, but the main story arc I was trying to tell [had to do with] whether or not he was really sick—whether he was making it up in his head or whether he had some real, objective diagnosis. But he had a spinal tap and found out he was really sick. That’s not very dramatic, right? The hard part for me was trying to dramatize how real this was for him, and how painful this was for him. Part of that came from his mom being so open [about] when he was suicidal for a period, and part of it came from being able to talk to a lot of other people in the community about their darkest moments, and show that it wasn’t just Lloyd who felt this way.
The other problem was that conferences are really not all that interesting. You’re trying to make scenes from what is essentially a boring conference hotel with a bunch of people who are sleepy and not doing much except yawning a lot and joking about sleeping. That was hard.
Also there were a lot of difficult things I had to talk to Lloyd about. Not everyone in the community really likes him, and he’s been selling prescription drugs online, which he claims is legal but his critics say is illegal.* That got a lot of people mad at him. I had to be very honest with him and he answered every question I had. I think that was possible because we had built up this rapport over time.
Did you yourself ever doubt Lloyd’s beliefs about his own illness?
Most of the way through, there was a little voice in the back of my head asking, “Is Lloyd really sick?” You don’t know, as a reporter. I studied neuroscience in college and I write a lot of neuroscience and psychology stories. I thought that it wasn’t very possible, but it was possible that maybe he was depressed, and maybe the depression was making him really sleepy. Maybe he was giving himself this drug for no reason. So when he got the results of his spinal tap it hit me, too. That is an objective marker. I knew that his mom believed him and she had documented all of this stuff. But there was something in the back of my head that said, “I have to be careful in writing this.” What your sources say is not necessarily the truth even if they believe it’s the truth.
How did you think the story through before you settled on the structure?
I tried to think about what was Lloyd’s central tension and how did it get resolved. I knew that I would end with Lloyd finding out the results of his spinal tap. I knew his whole backstory of getting sleepy, and I knew his suicidal feelings at Christmas would be the end of the problem section, or the beginning of his journey to find the answer. I guess I approached Lloyd mostly thinking about the ending first. If I know it’s going to end with him finding out his diagnosis, then how do we get there?
How did you fight the temptation to include some material just because you could, since the web doesn’t carry the space restrictions that print does? What was hardest to leave on the cutting-room floor?
This is where editors are so important to me. One of the most interesting parts of story—around 2,000 to 3,000 words—ended up cut from the final version because it wasn’t relevant to Lloyd and his diagnosis. I had gotten into legal and regulatory issues asking how in the hell did Anna arrange with the FDA to get this drug? How is Emory allowed to prescribe the drug to patients using a compounding pharmacy in Atlanta? They’ve prescribed it now to more than 100 people who just go to the pharmacy and buy tablets for a drug that hasn’t been approved for use in that form. I’m still really interested in those issues, and want to tell that story someday, but it was weighing the rest of this story down.
Were there any lessons that you learned while working on this story that you can share?
Yeah, I think the biggest lesson here for me is about access—how important it is to seek people who will be on board with you. That doesn’t mean you are advocating for them or collaborating with them in any way. But you are going to have to go back to them with many calls, and not everyone is up for that, or will be willing to say, “Oh yeah, I will give you my mom’s phone number,” or give you notes and journals and photographs. You can have a character with a great story, but if they don’t give you access, you don’t have anything.
A Glimpse Behind the Scenes:
* Correction 4/21/15: An earlier version of this story incorrectly stated that prescription drugs that Lloyd discussed are legal in Australia.
TON cofounder and editor-at-large Jeanne Erdmann is an award-winning freelance health-and-science writer based in Missouri. Her writing has been published in Nature Medicine, Nature, Women’s Health, Discover, The Washington Post, Slate, Aeon, and elsewhere. She is on the board of the Association of Health Care Journalists. Follow her on Twitter @jeanne_erdmann.