The Immortal Life of Henrietta Lacks

by Rebecca Skloot

  Zakariyya’s apartment was a small studio with a sliver of a kitchen where Deborah and the boys had been watching us from a window. Zakariyya’s belongings could have fit into the back of a pickup truck: a small Formica table, two wooden chairs, a full-sized mattress with no frame, a clear plastic bed skirt, and a set of navy sheets. No blankets, no pillows. Across from his bed sat a small television with a VCR balanced on top.

  Zakariyya’s walls were bare except for a row of photocopied pictures. The one of Henrietta with her hands on her hips hung next to the only other known picture of her: in it, she stands with Day in a studio sometime in the forties, their backs board-straight, eyes wide and staring ahead, mouths frozen in awkward non-smiles. Someone had retouched the photo and painted Henrietta’s face an unnatural yellow. Beside it was a breathtaking picture of his sister Elsie, standing in front of a white porch railing next to a basket of dried flowers. She’s about six years old, in a plaid jumper dress, white T-shirt, bobby socks and shoes, her hair loose from its braids, right hand gripping something against her chest. Her mouth hangs slightly open, brow creased and worried, both eyes looking to the far right of the frame, where Deborah imagines her mother was standing.

  Zakariyya pointed to several diplomas hanging near the photos, for welding, refrigeration, diesel. “I got so many damn diplomas,” he said, “but jobs pass me by because of my criminal record and everything, so I still got all kind of troubles.” Zakariyya had been in and out of trouble with the law since he got out of jail, with various charges for assault and drunk and disorderly conduct.

  “I think them cells is why I’m so mean,” he said. “I had to start fightin before I was even a person. That’s the only way I figure I kept them cancer cells from growin all over me while I was inside my mother. I started fightin when I was just a baby in her womb, and I never known nothin different.”

  Deborah thinks it was more than that. “That evil woman Ethel taught him hate,” she said. “Beat every drop of it into his little body—put the hate of a murderer into him.”

  Zakariyya snorted when he heard Ethel’s name. “Livin with that abusive crazy woman was worse than livin in prison!” he yelled, his eyes narrowing to slits. “It’s hard to talk about what she did to me. When I get to thinkin about them stories, make me want to kill her, and my father. Cause of him I don’t know where my mother buried. When that fool die, I don’t wanna know where he buried neither. He need to get to a hospital? Let him catch a cab! Same with the rest of the so-called family who buried her. I don’t never wanna see them niggers no more.”

  Deborah cringed. “See,” she said, looking at me. “Everybody else never let him talk because he speak things the way he want to. I say let him talk, even if we be upset by what he’s sayin. He’s mad, gotta get it out, otherwise he gonna keep on keeping it, and it’s gonna blow him right on up.”

  “I’m sorry,” Zakariyya said. “Maybe her cells have done good for some people, but I woulda rather had my mother. If she hadn’t been sacrificed, I mighta growed up to be a lot better person than I am now.”

  Deborah stood from the bed where she’d been sitting with her grandsons’ heads on her lap. She walked over to Zakariyya and put her arm around his waist. “Come on walk us out to the car,” she said. “I got something I want to give you.”

  Outside, Deborah threw open the back of her jeep and rummaged through blankets, clothes, and papers until she turned around holding the photo of Henrietta’s chromosomes that Christoph Lengauer had given her. She smoothed her fingers across the glass, then handed it to Zakariyya.

  “These supposed to be her cells?” he asked.

  Deborah nodded. “See where it stained bright colors? That’s where all her DNA at.”

  Zakariyya raised the picture to eye level and stared in silence. Deborah rubbed her hand on his back and whispered, “I think if anybody deserve that, it’s you, Zakariyya.”

  Zakariyya turned the picture to see it from every angle. “You want me to have this?” he said finally.

  “Yeah, like you to have that, put it on your wall,” Deborah said.

  Zakariyya’s eyes filled with tears. For a moment the dark circles seemed to vanish, and his body relaxed.

  “Yeah,” he said, in a soft voice unlike anything we’d heard that day. He put his arm on Deborah’s shoulder. “Hey, thanks.”

  Deborah wrapped her arms as far around his waist as she could reach, and squeezed. “The doctor who gave me that said he been working with our mother for his whole career and he never knew anything about where they came from. He said he was sorry.”

  Zakariyya looked at me. “What’s his name?”

  I told him, then said, “He wants to meet you and show you the cells.”

  Zakariyya nodded, his arm still around Deborah’s shoulder. “Okay,” he said. “That sounds good. Let’s go for it.” Then he walked slowly back to his building, holding the picture in front of him at eye level, seeing nothing ahead but the DNA in his mother’s cells.

  31

  Hela, Goddess of Death

  The day after I got home from our marathon visit, a man Deborah didn’t know called her asking if she’d ride on a HeLa float in a black rodeo. He told her to be careful of people looking to find out where Henrietta’s grave was because they might want to steal her bones, since her body was so valuable to science. Deborah told the man she’d been talking to me for a book, and he warned her not to talk to white people about her story. She panicked and called her brother Lawrence, who told her the man was right, so she left me a message saying she couldn’t talk to me anymore. But by the time I got the message and called her back, she’d changed her mind.

  “Everybody always yellin, ‘Racism! Racism! That white man stole that black woman’s cells! That white man killed that black woman!’ That’s crazy talk,” she told me. “We all black and white and everything else—this isn’t a race thing. There’s two sides to the story, and that’s what we want to bring out. Nothing about my mother is truth if it’s about wantin to fry the researchers. It’s not about punish the doctors or slander the hospital. I don’t want that.”

  Deborah and I would go on like this for a full year. Each time I visited, we’d walk the Baltimore Harbor, ride boats, read science books together, and talk about her mother’s cells. We took Davon and Alfred to the Maryland Science Center, where they saw a twenty-foot wall covered floor to ceiling with a picture of cells stained neon green and magnified under a microscope. Davon grabbed my hand and pulled me toward the wall of cells, yelling, “Miss Rebecca! Miss Rebecca! Is that Great-Grandma Henrietta?” People nearby stared as I said, “Actually, they might be,” and Davon pranced around singing, “Grandma Henrietta famous! Grandma Henrietta famous!”

  At one point, as Deborah and I walked along the cobblestone streets of Fell’s Point late at night, she turned to me and without prompting said, “I’ll bring them medical records out on my terms and when I think is right.” She told me that the night she tackled her mother’s medical records and ran home, she’d thought I was trying to steal them. She said, “I just need somebody I can trust, somebody that will talk to me and don’t keep me in the dark.” She asked me to promise I wouldn’t hide anything from her. I promised I wouldn’t.

  Between trips, Deborah and I would spend hours each week talking over the phone. Occasionally someone would convince her she couldn’t trust a white person to tell her mother’s story, and she’d call me in a panic, demanding to know whether Hopkins was paying me to get information from her like people said. Other times she’d get suspicious about money, like when a genetics textbook publisher called offering her $300 for permission to print the photo of Henrietta. When Deborah said they had to give her $25,000 and they said no, she called me demanding to know who was paying me to write my book, and how much I was going to give her.

  Each time I told her the same thing: I hadn’t sold the book yet, so at that point I was paying for my research with student loans and credit cards. And regardless, I couldn’
t pay her for her story. Instead, I said, if the book ever got published, I would set up a scholarship fund for descendants of Henrietta Lacks. On Deborah’s good days, she was excited about the idea. “Education is everything,” she’d say. “If I’d had more of it, maybe this whole thing about my mother wouldn’t have been so hard. That’s why I’m always tellin Davon, ‘Keep on studyin, learnin all you can.’” But on bad days, she’d think I was lying and cut me off again.

  Those moments never lasted long, and they always ended with Deborah asking me to promise yet again that I’d never hide anything from her. Eventually I told her she could even come with me when I did some of my research if she wanted, and she said, “I want to go to centers and colleges and all that. Learning places. And I want to get the medical record and autopsy report on my sister.”

  I began sending her stacks of information I uncovered about her mother—scientific journal articles, photos of the cells, even an occasional novel, poem, or short story based on HeLa. In one, a mad scientist used HeLa as a biological weapon to spread rabies; another featured yellow house paint made of HeLa cells that could talk. I sent Deborah news of exhibits where several artists projected Henrietta’s cells on walls, and one displayed a heart-shaped culture she’d grown by fusing her own cells with HeLa. With each packet, I sent notes explaining what each thing meant, clearly labeling what was fiction and what wasn’t, and warning her about anything that might upset her.

  Each time Deborah got a package, she’d call to talk about what she read, and gradually her panicked calls grew less frequent. Soon, after she realized I was the same age as her daughter, she started calling me “Boo,” and insisted I buy a cell phone because she worried about me driving the interstates alone. Each time I talked to her brothers she’d yell at them, only half joking, saying, “Don’t you try to take my reporter! Go get your own!”

  When we met for our first trip, Deborah got out of her car wearing a black ankle-length skirt, black sandals with heels, and a black shirt covered with an open black cardigan. After we hugged, she said, “I got on my reporter clothes!” She pointed at my black button-up shirt, black pants, and black boots and said, “You always wear black, so I figured I should dress like you so I blend in.”

  For each trip, Deborah filled her jeep floor to ceiling with every kind of shoes and clothes she might need (“You never know when the weather gonna change”). She brought pillows and blankets in case we got stranded somewhere, an oscillating fan in case she got hot, plus all her haircutting and manicure equipment from beauty school, boxes of videotapes, music CDs, office supplies, and every document she had related to Henrietta. We always took two cars because Deborah didn’t trust me enough to ride with me yet. I’d follow behind, watching her black driving cap bop up and down to her music. Sometimes, when we rounded curves or stopped at lights, I could hear her belting out, “Born to Be Wild,” or her favorite William Bell song, “I Forgot to Be Your Lover.”

  Eventually, Deborah let me come to her house. It was dark, with thick closed curtains, black couches, dim lights, and deep brown wood-paneled walls lined with religious scenes on blacklight posters. We spent all our time in her office, where she slept most nights instead of the bedroom she shared with Pullum—they fought a lot, she told me, and needed some peace.

  Her room was about six feet wide, with a twin bed against one wall and a small desk directly across from it, nearly touching the bed. On top of the desk, stacked beneath reams of paper, boxes of envelopes, letters, and bills was her mother’s Bible, its pages warped, cracking with age, and spotted with mold, her mother’s and sister’s hair still tucked inside.

  Deborah’s walls were covered floor to ceiling with colorful photos of bears, horses, dogs, and cats she’d torn from calendars, as well as nearly a dozen bright felt squares she and Davon had made by hand. One was yellow with THANK YOU JESUS FOR LOVING ME written in big letters; another said PROPHECIES FULFILLED and was covered with coins made of tinfoil. A shelf at the head of her bed was crammed with videotapes of infomercials: for a Jacuzzi, an RV, a trip to Disneyland. Nearly every night Deborah would say, “Hey Davon, you want to go on vacation?” When he nodded yes she’d ask, “Where you want to go, Disneyland, spa, or RV trip?” They’d watched each tape many times.

  At the end of one visit, I showed Deborah how to get online with an old computer someone had given her years earlier, then taught her to use Google. Soon she started taking Ambien—a narcotic sleep aid—and sitting up nights in a drugged haze, listening to William Bell on headphones, Googling “Henrietta” and “HeLa.”

  Davon referred to Deborah’s Ambien as “dummy medicine,” because it made her wander the house in the middle of the night like a zombie, talking nonsense and trying to cook breakfast by chopping cereal with a butcher knife. When he stayed with her, Davon often woke up in the middle of the night to find Deborah sleeping at her computer, head down and hands on the keyboard. He’d just push her off the chair into bed and tuck her in. When Davon wasn’t there, Deborah often woke up with her face on the desk, surrounded by a mountain of pages that spilled from her printer onto the floor: scientific articles, patent applications, random newspaper articles and blog posts, including many that had no connection to her mother but used the words Henrietta or lacks or Hela.

  And, surprisingly, there were many of the latter. Hela is the native name for the country of Sri Lanka, where activists carry signs demanding “Justice for the Hela Nation.” It’s the name of a defunct German tractor company and an award-winning shih-tzu dog; it’s a seaside resort in Poland, an advertising firm in Switzerland, a Danish boat where people gather to drink vodka and watch films, and a Marvel comic book character who appears in several online games: a seven-foot-tall, half-black, half-white goddess who’s part dead and part alive, with “immeasurable” intelligence, “superhuman” strength, “godlike” stamina and durability, and five hundred pounds of solid muscle. She’s responsible for plagues, sickness, and catastrophes; she’s immune to fire, radiation, toxins, corrosives, disease, and aging. She can also levitate and control people’s minds.

  When Deborah found pages describing Hela the Marvel character, she thought they were describing her mother, since each of Hela’s traits in some way matched what Deborah had heard about her mother’s cells. But it turned out the sci-fi Hela was inspired by the ancient Norse goddess of death, who lives trapped in a land between hell and the living. Deborah figured that goddess was based on her mother too.

  One day, around three o’clock in the morning, my phone rang as I slept, feverish with flu. Deborah yelled on the other end, “I told you London cloned my mother!” Her voice was slow and slurred from Ambien.

  She’d Googled HeLa, clone, London, and DNA, and gotten thousands of hits with summaries like this, from an online chat-room discussion about HeLa cells: “Each contains a genetic blueprint for constructing Henrietta Lacks…. Can we clone her?” Her mother’s name showed up under headlines like CLONING and HUMAN FARMING, and she thought those thousands of hits were proof that scientists had cloned thousands of Henriettas.

  “They didn’t clone her,” I said. “They just made copies of her cells. I promise.”

  “Thanks Boo, I’m sorry I woke you,” she cooed. “But if they cloning her cells, does that mean someday they could clone my mother?”

  “No,” I said. “Good night.”

  After several weeks of finding Deborah unconscious, with her phone in her hand, or face on the keyboard, Davon told his mother he needed to stay at his grandmother’s house all the time, to take care of her after she took her medicine.

  Deborah took an average of fourteen pills a day, which cost her about $150 each month after her husband’s insurance, plus Medicaid and Medicare. “I think it’s eleven prescriptions,” she told me once, “maybe twelve. I can’t keep track, they change all the time.” One for acid reflux went from $8 one month to $135 the next, so she stopped taking it, and at one point her husband’s insurance canceled her prescription coverage, so
she started cutting her pills in half to make them last. When the Ambien ran out, she stopped sleeping until she got more.

  She told me her doctors started prescribing the drugs in 1997 after what she referred to as “the Gold Digger Situation,” which she refused to tell me about. That was when she’d applied for Social Security disability, she said, which she only got after several court appearances.

  “Social Security people said everything was all in my head,” she told me. “They ended up sending me to about five psychiatrist and a bunch of doctors. They say I’m paranoia, I’m schizophrenia, I’m nervous. I got anxiety, depression, degenerating kneecaps, bursitis, bulged discs in my back, diabetes, osteoporosis, high blood pressure, cholesterol. I don’t know all of what’s wrong with me by name,” she said. “I don’t know if anyone do. All I know is, when I get in that mood and I get frightened, I hide.”

  That’s what happened the first time I called, she said. “I was all excited, sayin I want a book written about my mother. Then things just started going in my head and I got scared.

  “I know my life could be better and I wish it was,” she told me. “When people hear about my mother cells they always say, ‘Oh y’all could be rich! Y’all gotta sue John Hopkin, y’all gotta do this and that.’ But I don’t want that.” She laughed. “Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells prob ably helped make.”

  Eventually, as Deborah grew comfortable with the Internet, she started using it for more than terrifying herself in the middle of the night. She made lists of questions for me and printed articles about research done on people without their knowledge or consent—from a vaccine trial in Uganda to the testing of drugs on U.S. troops. She started organizing information into carefully labeled folders: one about cells, another about cancer, another full of definitions of legal terms like statute of limitations and patient confidentiality. At one point she stumbled on an article called “What’s Left of Henrietta Lacks?” that infuriated her by saying Henrietta had probably gotten HPV because she “slept around.”