The Immortal Life of Henrietta Lacks Read online

  All of the stories mentioned that scientists had begun doing research on Henrietta’s children, but the Lackses didn’t seem to know what that research was for. They said they were being tested to see if they had the cancer that killed Henrietta, but according to the reporters, scientists were studying the Lacks family to learn more about Henrietta’s cells. The stories quoted her son Lawrence, who wanted to know if the immortality of his mother’s cells meant that he might live forever too. But one member of the family remained voiceless: Henrietta’s daughter, Deborah.

  As I worked my way through graduate school studying writing, I became fixated on the idea of someday telling Henrietta’s story. At one point I even called directory assistance in Baltimore looking for Henrietta’s husband, David Lacks, but he wasn’t listed. I had the idea that I’d write a book that was a biography of both the cells and the woman they came from—someone’s daughter, wife, and mother.

  I couldn’t have imagined it then, but that phone call would mark the beginning of a decadelong adventure through scientific laboratories, hospitals, and mental institutions, with a cast of characters that would include Nobel laureates, grocery store clerks, convicted felons, and a professional con artist. While trying to make sense of the history of cell culture and the complicated ethical debate surrounding the use of human tissues in research, I’d be accused of conspiracy and slammed into a wall both physically and metaphorically, and I’d eventually find myself on the receiving end of something that looked a lot like an exorcism. I did eventually meet Deborah, who would turn out to be one of the strongest and most resilient women I’d ever known. We’d form a deep personal bond, and slowly, without realizing it, I’d become a character in her story, and she in mine.

  Deborah and I came from very different cultures: I grew up white and agnostic in the Pacific Northwest, my roots half New York Jew and half Midwestern Protestant; Deborah was a deeply religious black Christian from the South. I tended to leave the room when religion came up in conversation because it made me uncomfortable; Deborah’s family tended toward preaching, faith healings, and sometimes voo doo. She grew up in a black neighborhood that was one of the poorest and most dangerous in the country; I grew up in a safe, quiet middle-class neighborhood in a predominantly white city and went to high school with a total of two black students. I was a science journalist who referred to all things supernatural as “woo-woo stuff;” Deborah believed Henrietta’s spirit lived on in her cells, controlling the life of anyone who crossed its path. Including me.

  “How else do you explain why your science teacher knew her real name when everyone else called her Helen Lane?” Deborah would say. “She was trying to get your attention.” This thinking would apply to everything in my life: when I married while writing this book, it was because Henrietta wanted someone to take care of me while I worked. When I divorced, it was because she’d decided he was getting in the way of the book. When an editor who insisted I take the Lacks family out of the book was injured in a mysterious accident, Deborah said that’s what happens when you piss Henrietta off.

  The Lackses challenged everything I thought I knew about faith, science, journalism, and race. Ultimately, this book is the result. It’s not only the story of HeLa cells and Henrietta Lacks, but of Henrietta’s family—particularly Deborah—and their lifelong struggle to make peace with the existence of those cells, and the science that made them possible.

  DEBORAH’S VOICE

  When people ask—and seems like people always be askin to where I can’t never get away from it—I say, Yeah, that’s right, my mother name was Henrietta Lacks, she died in 1951, John Hopkins took her cells and them cells are still livin today, still multiplyin, still growin and spreadin if you don’t keep em frozen. Science calls her HeLa and she’s all over the world in medical facilities, in all the computers and the Internet everywhere.

  When I go to the doctor for my checkups I always say my mother was HeLa. They get all excited, tell me stuff like how her cells helped make my blood pressure medicines and antidepression pills and how all this important stuff in science happen cause of her. But they don’t never explain more than just sayin, Yeah, your mother was on the moon, she been in nuclear bombs and made that polio vaccine. I really don’t know how she did all that, but I guess I’m glad she did, cause that mean she helpin lots of people. I think she would like that.

  But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense. People got rich off my mother without us even knowin about them takin her cells, now we don’t get a dime. I used to get so mad about that to where it made me sick and I had to take pills. But I don’t got it in me no more to fight. I just want to know who my mother was.

  1

  The Exam

  On January 29, 1951, David Lacks sat behind the wheel of his old Buick, watching the rain fall. He was parked under a towering oak tree outside Johns Hopkins Hospital with three of his children—two still in diapers—waiting for their mother, Henrietta. A few minutes earlier she’d jumped out of the car, pulled her jacket over her head, and scurried into the hospital, past the “colored” bathroom, the only one she was allowed to use. In the next building, under an elegant domed copper roof, a ten-and-a-half-foot marble statue of Jesus stood, arms spread wide, holding court over what was once the main entrance of Hopkins. No one in Henrietta’s family ever saw a Hopkins doctor without visiting the Jesus statue, laying flowers at his feet, saying a prayer, and rubbing his big toe for good luck. But that day Henrietta didn’t stop.

  She went straight to the waiting room of the gynecology clinic, a wide-open space, empty but for rows of long straight-backed benches that looked like church pews.

  “I got a knot on my womb,” she told the receptionist. “The doctor need to have a look.”

  For more than a year Henrietta had been telling her closest girlfriends something didn’t feel right. One night after dinner, she sat on her bed with her cousins Margaret and Sadie and told them, “I got a knot inside me.”

  “A what?” Sadie asked.

  “A knot,” she said. “It hurt somethin awful—when that man want to get with me, Sweet Jesus aren’t them but some pains.”

  When sex first started hurting, she thought it had something to do with baby Deborah, who she’d just given birth to a few weeks earlier, or the bad blood David sometimes brought home after nights with other women—the kind doctors treated with shots of penicillin and heavy metals.

  Henrietta grabbed her cousins’ hands one at a time and guided them to her belly, just as she’d done when Deborah started kicking.

  “You feel anything?”

  The cousins pressed their fingers into her stomach again and again.

  “I don’t know,” Sadie said. “Maybe you’re pregnant outside your womb—you know that can happen.”

  “I’m no kind of pregnant,” Henrietta said. “It’s a knot.”

  “Hennie, you gotta check that out. What if it’s somethin bad?”

  But Henrietta didn’t go to the doctor, and the cousins didn’t tell anyone what she’d said in the bedroom. In those days, people didn’t talk about things like cancer, but Sadie always figured Henrietta kept it secret because she was afraid a doctor would take her womb and make her stop having children.

  About a week after telling her cousins she thought something was wrong, at the age of twenty-nine, Henrietta turned up pregnant with Joe, her fifth child. Sadie and Margaret told Henrietta that the pain probably had something to do with a baby after all. But Henrietta still said no.

  “It was there before the baby,” she told them. “It’s somethin else.”

  They all stopped talking about the knot, and no one told Henrietta’s husband David anything about it. Then, four and a half months after baby Joseph was born, Henrietta went to the bathroom and found blood spotting her underwear when it wasn’t her time of the month.

  She filled her bathtub, lowered hersel
f into the warm water, and slowly spread her legs. With the door closed to her children, husband, and cousins, Henrietta slid a finger inside herself and rubbed it across her cervix until she found what she somehow knew she’d find: a hard lump, deep inside, as though someone had lodged a marble just to the left of the opening to her womb.

  Henrietta climbed out of the bathtub, dried herself off, and dressed. Then she told her husband, “You better take me to the doctor. I’m bleedin and it ain’t my time.”

  Her local doctor took one look inside her, saw the lump, and figured it was a sore from syphilis. But the lump tested negative for syphilis, so he told Henrietta she’d better go to the Johns Hopkins gynecology clinic.

  Hopkins was one of the top hospitals in the country. It was built in 1889 as a charity hospital for the sick and poor, and it covered more than a dozen acres where a cemetery and insane asylum once sat in East Baltimore. The public wards at Hopkins were filled with patients, most of them black and unable to pay their medical bills. David drove Henrietta nearly twenty miles to get there, not because they preferred it, but because it was the only major hospital for miles that treated black patients. This was the era of Jim Crow—when black people showed up at white-only hospitals, the staff was likely to send them away, even if it meant they might die in the parking lot. Even Hopkins, which did treat black patients, segregated them in colored wards, and had colored-only fountains.

  So when the nurse called Henrietta from the waiting room, she led her through a single door to a colored-only exam room—one in a long row of rooms divided by clear glass walls that let nurses see from one to the next. Henrietta undressed, wrapped herself in a starched white hospital gown, and lay down on a wooden exam table, waiting for Howard Jones, the gynecologist on duty. Jones was thin and graying, his deep voice softened by a faint Southern accent. When he walked into the room, Henrietta told him about the lump. Before examining her, he flipped through her chart—a quick sketch of her life, and a litany of untreated conditions:

  Sixth or seventh grade education; housewife and mother of five. Breathing difficult since childhood due to recurrent throat infections and deviated septum in patient’s nose. Physician recommended surgical repair. Patient declined. Patient had one toothache for nearly five years; tooth eventually extracted with several others. Only anxiety is oldest daughter who is epileptic and can’t talk. Happy household. Very occasional drinker. Has not traveled. Well nourished, cooperative. Patient was one of ten siblings. One died of car accident, one from rheumatic heart, one was poisoned. Unexplained vaginal bleeding and blood in urine during last two pregnancies; physician recommended sickle cell test. Patient declined. Been with husband since age 15 and has no liking for sexual intercourse. Patient has asymptomatic neuro syphilis but cancelled syphilis treatments, said she felt fine. Two months prior to current visit, after delivery of fifth child, patient had significant blood in urine. Tests showed areas of increased cellular activity in the cervix. Physician recommended diagnostics and referred to specialist for ruling out in fection or cancer. Patient canceled appointment. One month prior to current visit, patient tested positive for gonorrhea. Patient recalled to clinic for treatment. No response.

  It was no surprise that she hadn’t come back all those times for follow-up. For Henrietta, walking into Hopkins was like entering a foreign country where she didn’t speak the language. She knew about harvesting tobacco and butchering a pig, but she’d never heard the words cervix or biopsy. She didn’t read or write much, and she hadn’t studied science in school. She, like most black patients, only went to Hopkins when she thought she had no choice.

  Jones listened as Henrietta told him about the pain, the blood. “She says that she knew there was something wrong with the neck of her womb,” he wrote later. “When asked why she knew it, she said that she felt as if there were a lump there. I do not quite know what she means by this, unless she actually palpated this area.”

  Henrietta lay back on the table, feet pressed hard in stirrups as she stared at the ceiling. And sure enough, Jones found a lump exactly where she’d said he would. He described it as an eroded, hard mass about the size of a nickel. If her cervix was a clock’s face, the lump was at four o’clock. He’d seen easily a thousand cervical cancer lesions, but never anything like this: shiny and purple (like “grape Jello,” he wrote later), and so delicate it bled at the slightest touch. Jones cut a small sample and sent it to the pathology lab down the hall for a diagnosis. Then he told Henrietta to go home.

  Soon after, Howard Jones sat down and dictated notes about Henrietta and her diagnosis: “Her history is interesting in that she had a term delivery here at this hospital, September 19, 1950,” he said. “No note is made in the history at that time, or at the six weeks’ return visit that there is any abnormality of the cervix.”

  Yet here she was, three months later, with a full-fledged tumor. Either her doctors had missed it during her last exams—which seemed impossible—or it had grown at a terrifying rate.

  2

  Clover

  Henrietta Lacks was born Loretta Pleasant in Roanoke, Virginia, on August 1, 1920. No one knows how she became Henrietta. A midwife named Fannie delivered her into a small shack on a dead-end road overlooking a train depot, where hundreds of freight cars came and went each day. Henrietta shared that house with her parents and eight older siblings until 1924, when her mother, Eliza Lacks Pleasant, died giving birth to her tenth child.

  Henrietta’s father, Johnny Pleasant, was a squat man who hobbled around on a cane he often hit people with. Family lore has it that he killed his own brother for trying to get fresh with Eliza. Johnny didn’t have the patience for raising children, so when Eliza died, he took them all back to Clover, Virginia, where his family still farmed the tobacco fields their ancestors had worked as slaves. No one in Clover could take all ten children, so relatives divided them up—one with this cousin, one with that aunt. Henrietta ended up with her grandfather, Tommy Lacks.

  Tommy lived in what everyone called the home-house—a four-room log cabin that once served as slave quarters, with plank floors, gas lanterns, and water Henrietta hauled up a long hill from the creek. The home-house stood on a hillside where wind whipped through cracks in the walls. The air inside stayed so cool that when relatives died, the family kept their corpses in the front hallway for days so people could visit and pay respects. Then they buried them in the cemetery out back.

  Henrietta’s grandfather was already raising another grandchild that one of his daughters had left behind after delivering him on the home-house floor. That child’s name was David Lacks, but everyone called him Day, because in the Lacks country drawl, house sounds like hyse, and David sounds like Day.

  Young Day was what the Lacks family called a sneak baby: a man named Johnny Coleman had passed through town; nine months later Day arrived. A twelve-year-old cousin and midwife named Munchie delivered him, blue as a stormy sky and not breathing. A white doctor came to the home-house with his derby and walking stick, wrote “stillborn” on Day’s birth certificate, then drove his horse-drawn buggy back to town, leaving a cloud of red dust behind.

  Munchie prayed as he rode away, Lord, I know you didn’t mean to take this baby. She washed Day in a tub of warm water, then put him on a white sheet where she rubbed and patted his chest until he gasped for breath and his blue skin warmed to soft brown.

  By the time Johnny Pleasant shipped Henrietta off to live with Grandpa Tommy, she was four and Day was almost nine. No one could have guessed she’d spend the rest of her life with Day—first as a cousin growing up in their grandfather’s home, then as his wife.

  As children, Henrietta and Day awoke each morning at four o’clock to milk the cows and feed the chickens, hogs, and horses. They tended a garden filled with corn, peanuts, and greens, then headed to the tobacco fields with their cousins Cliff, Fred, Sadie, Margaret, and a horde of others. They spent much of their young lives stooped in those fields, planting tobacco behind mule-drawn plows. Ea
ch spring they pulled the wide green leaves from their stalks and tied them into small bundles—their fingers raw and sticky with nicotine resin—then climbed the rafters of their grandfather’s tobacco barn to hang bundle after bundle for curing. Each summer day they prayed for a storm to cool their skin from the burning sun. When they got one, they’d scream and run through fields, snatching armfuls of ripe fruit and walnuts that the winds blew from the trees.

  Like most young Lackses, Day didn’t finish school: he stopped in the fourth grade because the family needed him to work the fields. But Henrietta stayed until the sixth grade. During the school year, after taking care of the garden and livestock each morning, she’d walk two miles—past the white school where children threw rocks and taunted her—to the colored school, a three-room wooden farmhouse hidden under tall shade trees, with a yard out front where Mrs. Coleman made the boys and girls play on separate sides. When school let out each day, and any time it wasn’t in session, Henrietta was in the fields with Day and the cousins.

  If the weather was nice, when they finished working, the cousins ran straight to the swimming hole they made each year by damming the creek behind the house with rocks, sticks, bags of sand, and anything else they could sink. They threw rocks to scare away the poison ous cottonmouth snakes, then dropped into the water from tree branches or dove from muddy banks.

  At nightfall they built fires with pieces of old shoes to keep the mosquitoes away, and watched the stars from beneath the big oak tree where they’d hung a rope to swing from. They played tag, ring-around-the-rosy, and hopscotch, and danced around the field singing until Grandpa Tommy yelled for everyone to go to bed.