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How Rebecca Skloot Built The Immortal Life of Henrietta Lacks

Author: David Dobbs

Skloot, Rebecca. "How Rebecca Skloot Built The Immortal Life of Henrietta Lacks." The Open Notebook, 22 Nov. 2011,

Rebecca Skloot Manda Townsend

Rebecca Skloot needs little introduction to most readers of The Open Notebook: Her book The Immortal Life of Henrietta Lacks has been a bestseller since its publication in February 2010, and she has toured the U.S. and Europe almost constantly since then talking about the book and the many issues of race, science, and privacy it raises. She’s also been interviewed many times as well. Here she talks with David Dobbs about two particularly writerly issues the book raises: structure, and the use of the writer as character. (This interview has been edited for length and clarity.)

You’ve been interviewed to death about this book, so I’ll limit this to two areas readers of The Open Notebook might be interested in: one is structure and the other is your decision to put yourself in the book and how you handled that.

That’s good. I honestly think that structure is one of the most important tools in writing, yet it’s not something that people often pick apart and really get obsessed with.

Did you carry your concern about structure into this project, or was it something you developed as you wrestled with it?

No, I came to the book already fixated on structure. I did my MFA in nonfiction at the University of Pittsburgh, and Lee Gutkind, who was one of my professors there, taught a readings class where he constantly harped on structure. Every class, the first exercise we had to do with every piece we read was map out the structure. The first day of class we read an essay in class and his first question when we were done was, “What’s the structure of this piece?” We had no idea what he meant. And he wouldn’t tell us. He would just push us and push us, and people would randomly guess things … They’d say, “It’s a profile.” He’d say, “No, that’s not a structure.”

Eventually it clicked for me when he walked me line-by-line through a piece he’d written and said, See how the piece starts here, then goes back in time here, then forward in time here, but always comes back to that same story I started with, which is actually in chronological order? The story was about a veterinarian facing tough decisions about whether to euthanize various animals; it did jump around in time a lot, and included sections of exposition, or facts—like the history of the field, or whatever—that weren’t part of the narrative, but when you pulled the essay apart it became clear that the structure was just a day in the life of this vet going from one patient to the next. From that point on, I started obsessively mapping out the structures of everything I read. When I started teaching I made my students do the same thing.

Any student who has ever studied with me would think, “Ugh. Structure, structure, structure; that’s all she talked about.” My philosophy is, once you understand what structure is, then you can talk about characters and narrative arcs and how to fill in the story. But for me, structure can just completely make or break something.

What are some key teaching pieces you used?

I always use John McPhee’s “Travels in Georgia” because it’s such a brilliant structure. Once you figure it out, it’s so basic. But it’s really hard to see it at first. When you say to people, “Read this thing and tell me how it’s structured,” they just can’t. But once you really pick it apart you see he starts in the middle of the story, then he goes forward for a while, then loops back around so by the middle of the piece you’re back at the point where you started, then you continue forward. He’s so subtle and graceful with the structure that few readers even realize they’ve looped back around to the point where the story started because he doesn’t hit you over the head with it. He calls it the lowercase e structure, and once you learn to recognize it you see it everywhere—in so many great stories, books, movies.

Skloot’s first visit to Turner Station and the Henrietta Lacks Museum. Skloot says, “Courtney Speed in Turner Station was hoping to turn this building into a museum in Henrietta’s honor; I took this photograph to document the building, its location relative to the sign welcoming people to Turner Station, etc. I then took at least a roll of photos (if not more) documenting every inch of the building that I thought might be relevant someday in the future for describing it.” Courtesy of Rebecca Skloot

Are there other writers or books who have been particular models for you, structure-wise?

When I was working on my book, I knew very early on that I wanted it to be a disjointed structure that told multiple stories at once and jumped around in time between different characters. If you learn the story of the HeLa cells by itself, it’s a very different story than if you learn it alongside the story of what happened to Henrietta and her family as a result of those cells. Each story takes on a different weight when you learn them at the same time.

Plus, if I had just told the story from the beginning—“Henrietta Lacks was born … blah, blah, blah”—nobody would have known why they should care who Henrietta was. Then Deborah, Henrietta’s daughter, would have appeared about halfway through the book and the focus of the story would have suddenly shifted completely to her, since she’s really the main character of the book in many ways. Then a few hundred pages later I would have appeared as a character out of nowhere. It would have all been very disjointed and disorienting and wouldn’t have worked.

The other thing I knew was that I wanted my book to read like a novel but be entirely true. That to me is the definition of Creative Nonfiction. So instead of reading nonfiction books as models, I turned to fiction. As soon as I realized I had to structure the book in a disjointed way, I went to a local bookseller, explained the story to her and said, Find me any novel you can find that takes place in multiple time periods, with multiple characters and voices, and jumps around a lot. So she did. Some of the most helpful books early on for me were Fried Green Tomatoes at the Whistle Stop Café, by Fannie Flagg; Love Medicine, by Louise Erdrich; As I Lay Dying, by William Faulkner; Home at the End of the World and The Hours, by Michael Cunningham. I read a long list of similarly structured novels that all proved helpful in some way or another: The Grass Dancer, by Susan Power; How to Make an American Quilt, by Whitney Otto; Oral History, by Lee Smith. I also read a lot of important African American authors to immerse myself in their voices, cultures, history: Zora Neale Hurston, James Baldwin, Maya Angelou, Alex Haley, Ida B. Wells, W.E.B. Du Bois, Toni Morrison, Edward P. Jones, Albert French … it’s a long list.

In a way you have to claim the right to do certain things fairly early in a book, or you can’t do it. In this case you had to claim the right to go backward and forward in time. You wait a while to get you in there—you don’t appear until page 67. But that’s early enough.

Right. This relates to the famous line from Checkov: “If in Act I you have a pistol hanging on the wall, then it must fire in the last act.” You need to set the reader up early for the story that follows while not introducing extraneous stuff that isn’t related to the plot.

In this case, since I knew the book was going to be a braid of three narratives (the story of me and Deborah; the story of Henrietta and the cells; and the story of Henrietta’s family), I needed to introduce all three strands of the braid up front, so I wouldn’t lose readers later. Doing that lets readers know what to expect and gives you license to play with the structure and timeline because you’ve prepared them for it. I spent a lot of time working and re-working how I’d handle introducing all three stories up front since there were so many things to squeeze in.

How do you get all those into the beginning of the book?

A page of Skloot’s notes from her first phone call with Deborah Lacks. (For more notes and Skloot’s explanations, see “A glimpse behind the scenes” below.) Courtesy of Rebecca Skloot

In a way there are three beginnings to this book because there are three different narratives. The prologue introduces the “me” side of the narrative where I write in first person. Then right after that I have that one little page in Deborah’s voice, to get her firmly in there. I struggled with that. I knew she had to be in the beginning of the book so you’d know she was going to be a main, strong character. I made countless attempts at that using different scenes from late in the story (for a while the book started with the scene of her seeing her mother’s cells for the first time, which is now part of the climax of the book in the third section). But none of that worked because it detracted too much from the real beginning: the moment Henrietta walks into the hospital for the first time in 1951. Eventually I realized readers just need to hear Deborah’s voice enough at the start to know there’s something big coming from this person later on that we’ll come back to.

Back to the larger structure. You start at 1950, and you pop back to 1920, and then essentially you come back to mid-century, end of century, mid-century, end of century, mid-century, end of century. And you progressively spend more time around 2000, and at a certain point it becomes more the story of you and Deborah, once you have the backstory established. How did you plot these time shifts?

I actually mapped it all out with index cards. The one chronological story that goes throughout the book is the story of me and Deborah. That’s totally chronological, never jumps around in time. Having one chronological story helped anchor the structure so I could jump around with the other stories more, because you always came back to that one straightforward narrative.

As I said earlier, I saw the structure of the book as a braid, with three stories that wove and wove and wove. But at a certain point the three strands of the braid became one and the narrative was just a straightforward chronological story from that point. That happens on page 231 with the sentence, “That reporter was me.” That’s the moment that all three of the narratives come together, and then it becomes just one. There’s no jumping back in time after that.

The story of you and Deborah is the one with the most classic narrative tension—there’s a suspense about what will happen.

It’s a road-trip—a journey where everybody gets transformed. I thought a lot about that element of narrative tension and how structure can help build the suspense. I learned quite a bit about that from novels, but even more so from movies. My boyfriend is an actor, writer, and director, and he started saying, “You should be watching movies because this jumping-around structure is one of the most standard movie structures.”

Skloot’s color-coded index cards. Courtesy of Rebecca Skloot

So I started watching a lot of movies structured like that and eventually found my way to “Hurricane,” about Hurricane Carter, the boxer. As I was watching it, I just freaked out because after the first few scenes I realized, Oh my God, this is the structure of my book. Three narratives braided together, a journey, etc. So I storyboarded that whole movie frame-by-frame on color-coded index cards (one color per narrative thread). I’d already mapped my own book out using the same three-colored index card scheme, and I’d mapped out a structure, but it wasn’t working. After I mapped out “Hurricane” I spread the cards out on a bed and put my book’s index cards on top of them, lining up the colors, to see how the film was braiding differently than I was. I immediately realized the problem with my structure was that it didn’t move around in time fast enough. That was the big lesson I learned from movies: that to make this kind of structure work, it has to move quickly. You can’t linger too long in any one time period or you lose the momentum of the other two.

How many designs did you try but throw out?

Oh man … From the very first version I wrote to the first version I considered a first draft, I probably went through easily 15 different structures. And that doesn’t count the many times I revised it after that: I’m a heavy re-writer. Once I had a first draft done, I rewrote it completely at least six times before my editor had to pry it out of my hands. I could have kept rewriting it forever. There isn’t a single paragraph from the first draft that made it into the final book without being rewritten. I’d bet money that there isn’t a single sentence from the first draft in the finished book.

This will give comfort to others who are struggling.

Now I want to move to the second topic. You’ve talked before about your decision to put yourself in the book as a presence, a character. What were the arguments in your own head, either as you saw them then or as you see them now, against and for putting yourself in?

Well, for me the argument for years was all against. I refused to be in this book. I think a lot of potentially great stories out there have been damaged and in some cases ruined by a writer not being able to step out of the story and let the story happen. When I teach, I always harp on my students, “Stop inserting yourself in other people’s stories.”

Speed’s barber chair, with a small photo of Henrietta Lacks propped against the wall. This and other photos Skloot took at Courtney Speed’s hair salon enabled her to describe the scene in which she visits the salon. Courtesy of Rebecca Skloot

There are times when I think writers should be in stories. You may be an actual character in the story, or you might be essential as a bridge between the reader and the story—there are some cases where stories are so foreign to readers that having a first person writer in the middle that fully understands the story can help readers relate to it. I wrote a story for The New York Times Magazine about people who spent tons of money on veterinary care for their goldfish; I put myself in there as a sort of sympathetic bridge toward understanding the people I was writing about. Most readers could relate more to me in that story (someone trying to understand why anyone would do MRIs and CT scans and surgery on a goldfish), than they could to the people I was writing about. In the end, I did understand their motives and saw the ways they were similar to motives we all share when it comes to love and difference—because of that, my presence seemed more likely to help readers connect to those characters than if I’d just told their story without my experience alongside it.

But other than those two situations—the writer as essential character or writer as bridge—I think there is no reason to be in a story.

In this case it offers a substantial gain: By seeing the Lacks family try to deal with you, we’re seeing them try to deal simultaneously with an intrusive world but also with a part of the world that wants to be more sympathetic to them—and a changing view of how human subjects should be used.

Exactly. Pretty early on, when I was struggling with this, I knew this wonderful fiction writer named Albert French who lived right around the corner from me in Pittsburgh. I would talk to him about the story as I was figuring it out. And he kept saying to me over and over again, about the Lacks family, pounding it into my head: “Their resistance to you is part of the story.”

At that point I didn’t know why they were resistant to me. He just kept repeating that. I realized I had to figure out why they were so resistant to me and that doing so would lead me to the real story. Which it did.

The Home House side door. Skloot says, “This is the door where Henrietta used to sit and hang her legs off a stoop while churning butter. It’s also where her daughter Elsie fell once and hit her head on the ground below. I wanted to be able to revisit that height, the door, everything about it.” Courtesy of Rebecca Skloot

Plus things started happening between me and Deborah that were not your usual writer-subject things, like her slamming me against a wall … like faith healings and something that resembled an exorcism. I would come home and tell my family and my agent and my friends about what was going on and they just kept saying, “This has to be in the book! This is part of the story.”

Even Deborah started harping on me. She would say, “Don’t you make me be in that book by myself. You’re just as much a part of this story as anybody else now.” That’s when I realized I had to be in the book because I was part of the story. It wasn’t that I was inserting myself. Without realizing it, I had actually become a character in their story.

Like it or not.

Yeah. Like it or not. I was one in a long line of people who’d come to them wanting something having to do with those cells, and in some ways, my presence in their lives was one of the most complicated yet: I was there for more than a decade, exposing Deborah to situations and information she never would have been exposed to. She wanted that, and I couldn’t have stopped her once we started, but some of those situations turned out to be dangerous for her. She came very near a stroke at one point because of information we found together about her sister.

The story of the HeLa cells is about many things—it’s about science and ethics, race, class, medicine, education. But overall, it’s also about unintended consequences: of doctors, of well-intended science, of journalism. I tell the story of all the other journalists who came along before me and the impact they had on the family. Eventually I realized it would be dishonest to not include the story of my own character, the journalist who came and didn’t leave for ten years. I also felt like I needed to include that story as a form of disclosure, so people could understand the relationship I developed with Deborah.

You’ve set up nicely my next question. This is something I’ve been dying to ask you since I read the book. First of all, you break a million rules of journalism—you’re incredibly embedded in this family, completely enmeshed. The story is sort of out of control. Deborah even tells you on page 233, “You have got no idea what you’re getting yourself into,” and you did not.


So reading it I had a strong, growing sense that we had a Rebecca Skloot, a mature writer, who’s writing a book about a young writer named Rebecca Skloot who was smart and fearless but nevertheless inexperienced and on the brink of major trouble all the time.

Clearly. Yes. Right! (laughter)

A foundation corner of the Home House. This photo helped Skloot document building materials and construction of the house, which was propped up with stones high off the ground. She took many photos of the Home House, from different angles and at different times of year. “These photos helped me create the many descriptions of the house in the book, and also captured the atmosphere of each visit, the rate of change of the house, the turn of seasons,” she says. Courtesy of Rebecca Skloot

Really. You end up in dangerous places; you’re dropped in homes of people who have reason to be hostile to you; at one point you seem in direct and immediate danger of assault when Henrietta’s son Zakariyya is standing over you, yelling at you in rage, and you’re saved—this is my favorite line in the whole book—when Deborah, whom you’ve been taking on reporting trips, for God’s sake, saves your ass by popping up out of nowhere at your shoulder and asking, ”Y’all still reportin’?”

Yeah, I know (laughter). I loved that—definitely one of my favorite lines too.

I think that was the moment that this image crystallized for me: of this young writer, not the one writing the book but the younger writer researching the book in the book, skating ever further out over ever deeper water covered by increasingly thin ice—and miraculously never falling through. Sometimes you could hear the ice crack.

To me this created an added layer of tension, and I suspect that for readers who aren’t thinking of Skloot the character versus Skloot the author, it created a tension, too. Did you mean to be one Rebecca writing about another Rebecca? Or did that sort of happen?

I was conscious of it only in that I was constantly arguing with my younger self.

How do you mean?

Throughout the book I was learning how to be a reporter and how to write. I started fresh from an undergraduate biology degree with no real training in journalism and no clue about how to do any of this. My notes from my first trip to Turner Station were horrible. I sat down ten years later to write that scene (a scene I hadn’t planned to write because I wasn’t planning to be in the book), and I opened the notebook and thought, “That’s all you wrote down? You moron! What were you doing?” My version of notes of the street where I was driving would be: “Dog. Trees. Brick.” It was useless information.

The thing that saved me was that I took compulsive amounts of photographs. I photographed everything—every room that I was in, every person I talked to, every street that I was on, the sky to capture the weather, you name it.

Not trusting that she was yet an expert at documenting surroundings in her notes, Skloot took this photo to document the sky and weather as she drove to Turner Station. Courtesy of Rebecca Skloot

So you were over-reporting visually.

Yes. Also I tape-recorded everything, including just driving around in the car yelling at myself—the 20-something me is in a car trying to convince myself to get out in the most dangerous part of East Baltimore and start knocking on the doors of strangers who I know aren’t going to be happy to see me … I’m driving around yelling into my tape recorder because I’m afraid. “Just get out of the car!”

But I would also hold up my tape recorder and drive and just babble into it: I’m driving down the street, and there are all these kids running around in the street and they’re wearing these clothes and they look like this and they’re waving at me and their moms are hanging laundry in front of houses that look like this … So when I went back and transcribed all my tapes, everything was there, including my internal issues, and that, combined with the photographs, let me go back and rewrite those scenes. But I also re-reported many of them. I would go back to the people who were there at the time and interview them about scenes that I had actually witnessed myself, to make sure I hadn’t missed anything. Many times they’d be like, “Weren’t you there? Why are you asking me these questions?” And I’d think, “No, that wasn’t me; that was ten-years-ago me; that’s actually a totally different me.”

In case she later decided to mention that there were wildflowers growing outside the abandoned building that might become the Henrietta Lacks Museum, Skloot photographed wildflowers growing nearby. She planned to have a botanist identify the species of flower if she described them. Courtesy of Rebecca Skloot

Writing the first-person stuff was hard, partly because I was resistant but also because it involved this weird battle with my younger, inexperienced self. Listening to these tapes later, it really registered, “Wow, you were doing something sort of crazy right there.”

Right. That’s the feeling I got repeatedly: “Oh my God, she just invited Deborah to do the reporting with her!” I was thinking as I read, “This cannot end well.”

But it did.

People often ask if I wish that this book had taken less time. I wouldn’t trade those ten years. If I had written this book faster, it just wouldn’t have worked. I needed all that time to really understand the story and how it all fit together.

Your enmeshment within the family kind of goes against a journalistic idea about involvement and distance from subjects and so on. Do you think it’s important to keep a certain distance, and if so, how do you reconcile that with how close you came to be with the Lacks family?

I think that it’s important to maintain distance in terms of autonomy of the story. So no matter how close and enmeshed I got with the Lacks family, there was never any question that I was a reporter. Deborah would call me “her reporter,” and I think that in part was because I was constantly reminding her that’s what I was. A reporter. I always had my notepad out and my tape recorder on because I felt like it was essential to have that constant reminder there: everything we talked about was going on the record. Deborah had no problem with that. When she had a point to make that she felt strongly about, she’d grab my tape recorder out of my hand and yell into the microphone, then she’d have me play it back for her so she could make sure it got recorded. There was never any question about our relationship being reporter and subject, and that I wasn’t just there to do an as-told-to story of the Lacks family’s life. We talked a lot about the other people I interviewed and research I did because I felt it was important to always be clear that I was telling all sides of this story, not just theirs. Which is what Deborah wanted anyway, so that was never an issue.

That said, I do feel like you have to open yourself up to the emotions of the story and be vulnerable as well. In that way, I’m not a fan of distance. With the Lacks family and everybody else, I have always been a very open writer. I feel like, I’m asking you endless questions and expecting you to answer them no matter how personal; it’s only fair that you be able to do the same to me. I think it helps build trust.

You go in guarded against Deborah and she’s gonna throw you out.

Oh yeah, to win Deborah’s trust, you’d have been that open, and then some. She spent so much of her life being deceived, having information withheld from her, she couldn’t trust someone if she didn’t feel like she knew them.

A glimpse behind the scenes:

  • A sampling of Skloot’s handwritten notes from her early reporting

David Dobbs

David Dobbs

David Dobbs is an author and journalist who writes about science and culture for The New York Times Magazine, The Atlantic, Wired, National Geographic, and other magazines. His e-book My Mother’s Lover, published by The Atavist, was a #1 Kindle-Single bestseller. He is the author of three other books and writes the Wired blog Neuron Culture. Several of his magazine stories have been included in leading anthologies, including Best American Science Writing 2010 and Best American Sports Writing 2011. Follow David on Twitter @David_Dobbs.

DMU Timestamp: November 10, 2023 15:21

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