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[5 of 5] The Immortal Life of Henrietta Lacks, Chapter 32 to Afterword, by Rebecca Skloot (2010)

Author: Rebecca Skloot

“Chapter 32 to Afterword.” The Immortal Life of Henrietta Lacks, by Rebecca Skloot, Broadway Paperbacks, an Imprint of the Crown Publishing Group, a Division of Random House, Inc., 2011.

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32 – “All That’s My Mother” (2001)

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Mar 16
Nyayeek D (Mar 16 2021 9:11AM) : Chapter 32 Summary more

Deborah, Zakariyya, and Skloot go to the Hopkins Lab and they saw the HeLa cells. They learned about Henriettas illness and found out that Hopkins Hospital made a mistake in Henrietta’s treatment. Because of this, they believe that the Lack family needs reparations for the mistreatment of Henrietta.

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By the time Deborah was ready to see her mother’s cells for the first time, Day couldn’t come. He’d said many times that he wanted to see his wife’s cells before he died, but he was eighty-five, in and out of the hospital with heart and blood pressure problems, and he’d just lost a leg to diabetes. Sonny had to work, and Lawrence said he wanted to talk to a lawyer about suing Hopkins instead of seeing the cells, which he referred to as “a multibillion-dollar corporation.”

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So on May 11, 2001, Deborah, Zakariyya, and I agreed to meet at the Hopkins Jesus statue to go see Henrietta’s cells. Earlier that morning, Deborah had warned me that Lawrence was convinced Hopkins was paying me to gather information about the family. He’d already called her several times that day saying he was coming to get the materials she’d collected related to her mother. So Deborah locked them in her office, took the key with her, and called me saying, “Don’t tell him where you are or go see him without me.”

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When I arrived at the Jesus, it stood just as it had when Henrietta visited it some fifty years earlier, looming more than ten feet tall beneath a tiered dome, pupil-less marble eyes staring straight ahead, arms outstretched and draped in stone robes. At Jesus’s feet, people had thrown piles of change, wilted daisies, and two roses—one fresh with thorns, the other cloth with plastic dewdrops. His body was gray-brown and dingy, except for his right foot, which glowed a polished white from decades of hands rubbing it for luck.

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Deborah and Zakariyya weren’t there, so I leaned against a far wall, watching a doctor in green scrubs kneel before the statue and pray as others brushed its toe on their way into the hospital without looking or breaking stride. Several people stopped to write prayers in over-sized books resting on wooden pedestals near the statue: “Dear Heavenly Father: If it is your will let me speak to Eddie this one last time.” “Please help my sons conquer their addictions.” “I ask you to provide my husband and I with jobs.” “Lord thank you for giving me another chance.”

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I walked to the statue, my heels echoing on marble, and rested my hand on its big toe—the closest I’d ever come to praying. Suddenly Deborah was beside me, whispering, “I hope He’s got our back on this one.” Her voice was utterly calm, her usual nervous laugh gone.

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I told her I did too.

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Deborah closed her eyes and began to pray. Then Zakariyya appeared behind us and let out a deep laugh.

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“He can’t do nothin to help you now!” Zakariyya yelled. He’d gained weight since I’d seen him last, and his heavy gray wool pants and thick blue down coat made him look even bigger. The black plastic arms of his glasses were so tight they’d etched deep grooves into his head, but he couldn’t afford new ones.

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He looked at me and said, “That sister of mine, she crazy for not wantin money from them cells.”

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Deborah rolled her eyes and hit his leg with her cane. “Be good or you can’t come see the cells,” she said.

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Zakariyya stopped laughing and followed as we headed toward Christoph Lengauer’s lab. Minutes later, Christoph walked toward us through the lobby of his building, smiling, hand outstretched. He was in his mid-thirties, with perfectly worn denim jeans, a blue plaid shirt, and shaggy light brown hair. He shook my hand and Deborah’s, then reached for Zakariyya’s. But Zakariyya didn’t move.

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“Okay!” Christoph said, looking at Deborah. “It must be pretty hard for you to come into a lab at Hopkins after what you’ve been through. I’m really glad to see you here.” He spoke with an Austrian accent, which made Deborah wiggle her eyebrows at me when he turned to press the elevator call button. “I thought we’d start in the freezer room so I can show you how we store your mother’s cells, then we can go look at them alive under a microscope.”

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“That’s wonderful,” Deborah said, as though he’d just said something entirely ordinary. Inside the elevator, she pressed against Zakariyya, one hand leaning on her cane, the other gripping her tattered dictionary. When the doors opened, we followed Christoph single file through a long narrow hall, its walls and ceiling vibrating with a deep whirring sound that grew louder as we walked. “That’s the ventilation system,” Christoph yelled. “It sucks all the chemicals and cells outside so we don’t have to breathe them in.”

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He threw open the door to his lab with a sweeping ta-da motion and waved us inside. “This is where we keep all the cells,” he yelled over a deafening mechanical hum that made Deborah’s and Zakariyya’s hearing aids squeal. Zakariyya’s hand shot up and tore his from his ear. Deborah adjusted the volume on hers, then walked past Christoph into a room filled wall-to-wall with white freezers stacked one on top of the other, rumbling like a sea of washing machines in an industrial laundromat. She shot me a wide-eyed, terrified look.

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Christoph pulled the handle of a white floor-to-ceiling freezer, and it opened with a hiss, releasing a cloud of steam into the room. Deborah screamed and jumped behind Zakariyya, who stood expressionless, hands in his pockets.

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“Don’t worry,” Christoph yelled, “it’s not dangerous, it’s just cold. They’re not minus twenty Celsius like your freezers at home, they’re minus eighty. That’s why when I open them smoke comes out.” He motioned for Deborah to come closer.

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“It’s all full of her cells,” he said.

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Deborah loosened her grip on Zakariyya and inched forward until the icy breeze hit her face, and she stood staring at thousands of inch-tall plastic vials filled with red liquid.

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“Oh God,” she gasped. “I can’t believe all that’s my mother.” Zakariyya just stared in silence.

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Christoph reached into the freezer, took out a vial, and pointed to the letters H-e-L-a written on its side. “There are millions and millions of her cells in there,” he said. “Maybe billions. You can keep them here forever. Fifty years, a hundred years, even more—then you just thaw them out and they grow.”

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He rocked the vial of HeLa cells back and forth in his hand as he started talking about how careful you have to be when you handle them. “We have an extra room just for the cells,” he said. “That’s important. Because if you contaminate them with anything, you can’t really use them anymore. And you don’t want HeLa cells to contaminate other cultures in a lab.”

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“That’s what happened over in Russia, right?” Deborah said.

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He did a double take and grinned. “Yes,” he said. “Exactly. It’s great you know about that.” He explained how the HeLa contamination problem happened, then said, “Her cells caused millions of dollars in damage. Seems like a bit of poetic justice, doesn’t it?”

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“My mother was just getting back at scientists for keepin all them secrets from the family,” Deborah said. “You don’t mess with Henrietta—she’ll sic HeLa on your ass!”

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Everyone laughed.

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Christoph reached into the freezer behind him, grabbed an other vial of HeLa cells, and held it out to Deborah, his eyes soft. She stood stunned for a moment, staring into his outstretched hand, then grabbed the vial and began rubbing it fast between her palms, like she was warming herself in winter.

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“She’s cold,” Deborah said, cupping her hands and blowing onto the vial. Christoph motioned for us to follow him to the incubator where he warmed the cells, but Deborah didn’t move. As Zakariyya and Christoph walked away, she raised the vial and touched it to her lips.

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“You’re famous,” she whispered. “Just nobody knows it.”

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Christoph led us into a small laboratory crammed full of microscopes, pipettes, and containers with words like BIOHAZARD and DNA written on their sides. Pointing to the ventilation hoods covering his tables, he said, “We don’t want cancer all over the place, so this sucks all the air to a filtration system that catches and kills any cells that are floating around.”

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He explained what culture medium was, and how he moved cells from freezer to incubator to grow. “Eventually they fill those huge bottles in the back,” he said, pointing to rows of gallon-sized jugs. “Then we do our experiments on them, like we find a new drug for cancer, pour it onto the cells, and see what happens.” Zakariyya and Deborah nodded as he told them how drugs go through testing in cells, then animals, and finally humans.

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Christoph knelt in front of an incubator, reached inside, and pulled out a dish with HeLa growing in it. “They’re really, really small, the cells,” he said. “That’s why we go to the microscope now so I can show them to you.” He flipped power switches, slid the dish onto the microscope’s platform, and pointed to a small monitor attached to the microscope. It lit up a fluorescent green, and Deborah gasped.

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“It’s a pretty color!”

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Christoph bent over the microscope to bring the cells into focus, and an image appeared on the screen that looked more like hazy green pond water than cells.

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“At this magnification you can’t see much,” Christoph said. “The screen is just boring because the cells are so small, even with a microscope you can’t see them sometimes.” He clicked a knob and zoomed in to higher and higher magnifications until the hazy sea of green turned into a screen filled with hundreds of individual cells, their centers dark and bulging.

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“Oooo,” Deborah whispered. “There they are.” She reached out and touched the screen, rubbing her finger from one cell to the next.

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Christoph traced the outline of a cell with his finger. “All this is one cell,” he said. “It kinda looks like a triangle with a circle in the middle, you see that?”

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He grabbed a piece of scrap paper and spent nearly a halfhour drawing diagrams and explaining the basic biology of cells as Deborah asked questions. Zakariyya turned up his hearing aid and leaned close to Christoph and the paper.

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“Everybody always talking about cells and DNA,” Deborah said at one point, “but I don’t understand what’s DNA and what’s her cells.”

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“Ah!” Christoph said, excited, “DNA is what’s inside the cell! Inside each nucleus, if we could zoom in closer, you’d see a piece of DNA that looked like this.” He drew a long, squiggly line. “There’s forty-six of those pieces of DNA in every human nucleus. We call those chromosomes—those are the things that were colored bright in that big picture I gave you.” “Oh! My brother got that picture hanging on his wall at home next to our mother and sister,” Deborah said, then looked at Zakariyya. “Did you know this is the man who gave you that picture?”

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Zakariyya looked to the ground and nodded, the corners of his mouth turning up into a barely perceptible smile.

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“Within the DNA in that picture is all the genetic information that made Henrietta Henrietta,” Christoph told them. “Was your mother tall or short?”

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“Short.”

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“And she had dark hair, right?” We all nodded.

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“Well, all that information came from her DNA,” he said. “So did her cancer—it came from a DNA mistake.”

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Deborah’s face fell. She’d heard many times that she’d inherited some of the DNA inside those cells from her mother. She didn’t want to hear that her mother’s cancer was in that DNA too.

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“Those mistakes can happen when you get exposed to chemicals or radiation,” Christoph said. “But in your mother’s case, the mistake was caused by HPV, the genital warts virus. The good news for you is that children don’t inherit those kinds of changes in DNA from their parents—they just come from being exposed to the virus.”

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“So we don’t have the thing that made her cells grow forever?” Deborah asked. Christoph shook his head. “Now you tell me after all these years!” Deborah yelled. “Thank God, cause I was wonderin!”

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She pointed at a cell on the screen that looked longer than the others. “This one is cancer, right? And the rest are her normal ones?”

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“Actually, HeLa is all just cancer,” Christoph said.

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“Wait a minute,” she said, “you mean none of our mother regular cells still livin? Just her cancer cells?”

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“That’s right.”

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“Oh! See, and all this time I thought my mother regular cells still livin!”

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Christoph leaned over the microscope again and began moving the cells quickly around the screen until he shrieked, “Look, there! See that cell?” He pointed to the center of the monitor. “See how it has a big nucleus that looks like it’s almost pinched in half in the middle? That cell is dividing into two cells right before our eyes! And both of those cells will have your mother’s DNA in them.”

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“Lord have mercy,” Deborah whispered, covering her mouth with her hand.

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Christoph kept talking about cell division, but Deborah wasn’t listening. She stood mesmerized, watching one of her mother’s cells divide in two, just as they’d done when Henrietta was an embryo in her mother’s womb.

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Deborah and Zakariyya stared at the screen like they’d gone into a trance, mouths open, cheeks sagging. It was the closest they’d come to seeing their mother alive since they were babies.

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After a long silence, Zakariyya spoke.

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“If those our mother’s cells,” he said, “how come they ain’t black even though she was black?”

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“Under the microscope, cells don’t have a color,” Christoph told him. “They all look the same—they’re just clear until we put color on them with a dye. You can’t tell what color a person is from their cells.” He motioned for Zakariyya to come closer. “Would you like to look at them through the microscope? They look better there.”

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Christoph taught Deborah and Zakariyya how to use the microscope, saying, “Look through like this … take your glasses off… now turn this knob to focus.” Finally the cells popped into view for Deborah. And through that microscope, for that moment, all she could see was an ocean of her mother’s cells, stained an ethereal fluorescent green.

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“They’re beautiful” she whispered, then went back to staring at the slide in silence. Eventually, without looking away from the cells, she said, “God, I never thought I’d see my mother under a microscope—I never dreamed this day would ever come.”

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“Yeah, Hopkins pretty much screwed up, I think,” Christoph said.

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Deborah bolted upright and looked at him, stunned to hear a scientist—one at Hopkins, no less—saying such a thing. Then she looked back into the microscope and said, “John Hopkin is a school for learning, and that’s important. But this is my mother. Nobody seem to get that.” “It’s true,” Christoph said. “Whenever we read books about science, it’s always HeLa this and HeLa that. Some people know those are the initials of a person, but they don’t know who that person is. That’s important history.”

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Deborah looked like she wanted to hug him. “This is amazing,” she said, shaking her head and looking at him like he was a mirage.

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Suddenly, Zakariyya started yelling something about George Gey. Deborah thumped her cane on his toe and he stopped in midsentence.

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“Zakariyya has a lot of anger with all this that’s been goin on,” she told Christoph. “I been trying to keep him calm. Sometime he explode, but he’s trying.”

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“I don’t blame you for being angry,” Christoph said. Then he showed them the catalog he used to order HeLa cells. There was a long list of the different HeLa clones anyone could buy for $167 a vial.

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“You should get that,” Christoph said to Deborah and Zakariyya.

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“Yeah, right,” Deborah said. “What I’m gonna do with a vial of my mother cells?” She laughed.

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“No, I mean you should get the money. At least some of it.”

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“Oh,” she said, stunned. “That’s okay. You know, when people hear about who HeLa was, first thing they say is, ‘Y’all should be millionaires!’”

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Christoph nodded. “Her cells are how it all started,” he said. “Once there is a cure for cancer, it’s definitely largely because of your mother’s cells.”

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“Amen,” Deborah said. Then, without a hint of anger, she told him, “People always gonna be makin money from them cells, nothing we can do about that. But we not gonna get any of it.”

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Christoph said he thought that was wrong. Why not treat valuable cells like oil, he said. When you find oil on somebody’s property, it doesn’t automatically belong to them, but they do get a portion of the profits. “No one knows how to deal with this when it comes to cells today,” he said. “When your mother got sick, doctors just did what they wanted and patients didn’t ask. But nowadays patients want to know what’s going on.”

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“Amen,” Deborah said again.

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Christoph gave them his cell phone number and said they could call any time they had questions about their mother’s cells. As we walked toward the elevator, Zakariyya reached up and touched Christoph on the back and said thank you. Outside, he did the same to me, then turned to catch the bus home.

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Deborah and I stood in silence, watching him walk away. Then she put her arm around me and said, “Girl, you just witnessed a miracle.”

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33 – The Hospital for the Negro Insane (2001)

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There were several things I’d promised Deborah we’d do together: seeing her mother’s cells was first; figuring out what happened to Elsie was second. So the day after we visited Christoph’s lab, Deborah and I set out on a weeklong trip that would start at Crownsville, where we hoped to find her sister’s medical records, then go through Clover and end in Roanoke, at the house where Henrietta was born.

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It was Mother’s Day, which had always been a sad day for Deborah, and this one hadn’t started well. She’d planned to take her grandson Alfred to see his father in jail before we left town. But her son had called saying he didn’t want Deborah or Little Alfred visiting until he could see them without looking through glass. He told her he wanted to learn about his grandmother, Henrietta, and asked Deborah to send him whatever information we found on our trip. “I been waiting for him to say that his whole life,” she told me, crying. “I just didn’t want him

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to have to get locked up in prison to do it.” But once again, she said, “I’m not gonna let that stop me. I just want to focus on the good, like seein my mother cells, and learnin about my sister.” So we drove to Crownsville in our separate cars.

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I don’t know what I expected the former Hospital for the Negro Insane to look like, but it certainly wasn’t what we found. Crownsville Hospital Center was on a sprawling 1,200-acre campus, with bright green hills, perfectly mowed lawns, walking paths, weeping cherry trees, and picnic tables. Its main building was red brick with white columns, its porch decorated with wide chairs and chandeliers. It looked like a nice place to sip mint juleps or sweet tea. One of the old hospital buildings was now a food bank; others housed the Police Criminal Investigation Division, an alternative high school, and a Rotary club.

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Inside the main building, we walked past empty offices in a long, empty white hallway, saying, “Hello?” and “Where is everybody?” and “This place is weird.” Then, at the end of the hall was a white door covered with years’ worth of dirt and handprints. It had the words MEDICAL RECORDS stenciled across it in broken block letters. Beneath that, in smaller letters, it said NO THOROUGHFARE.

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Deborah gripped the door handle and took a deep breath. “We ready for this?” she asked. I nodded. She grabbed my arm with one hand, threw the door open with the other, and we stepped inside.

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We found ourselves in a thick white metal cage that opened into the Medical Records room—an empty, warehouse-sized room with no staff, no patients, no chairs, no visitors, and no medical records. Its windows were bolted shut and covered with wire and dirt, its gray carpet bunched in ripples from decades of foot traffic. A waist-high cinder-block wall ran the length of the room, separating the waiting area from the area marked AUTHORIZED PERSONNEL ONLY, where several rows of tall metal shelves stood empty.

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“I can’t believe this,” Deborah whispered. “All them records is gone?” She ran her hand along the empty shelves, mumbling, “Nineteen fifty-five was the year where they killed her…. I want them records…. I know it wasn’t good. … Why else would they get rid of them?”

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No one had to tell us something awful had happened at Crownsville—we could feel it in the walls.

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“Let’s go find someone who can tell us something,” I said.

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We wandered into another long hallway, and Deborah began screaming. “Excuse me! We need to find the medical record! Does anyone know where it is?”

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Eventually a young woman poked her head out of an office and pointed us down the hall to another office, where someone pointed us to yet another. Finally we found ourselves in the office of a tall man with a thick white Santa Claus beard and wild, bushy eyebrows. Deborah charged over to him, saying, “Hi, I’m Deborah, and this is my reporter. You may have heard of us, my mama’s in history with the cells, and we need to find some medical record.”

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The man smiled. “Who was your mother,” he asked, “and what are the cells?”

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We explained why we were there, and he told us that the current medical records were in another building, and that there wasn’t much history left at Crownsville. “I wish we had an archivist,” he said. “I’m afraid I’m as close as you’ll get.”

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His name was Paul Lurz, and he was the hospital’s director of performance and improvement, but he also happened to be a social worker who’d majored in history, which was his passion. He motioned for us to come sit in his office.

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“There wasn’t much funding for treating blacks in the forties and fifties,” he said. “I’m afraid Crownsville wasn’t a very nice place to be back then.” He looked at Deborah. “Your sister was here?”

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She nodded.

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“Tell me about her.”

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“My father always say she never went past a child in her head,” she said, reaching into her purse for a crumpled copy of Elsie’s death certificate, which she began reading slowly out loud. “Elsie Lacks … cause of death (a) respiratory failure (b) epilepsy (c) cerebral palsy…. Spent five years in Crownsville State Hospital.” She handed Lurz the picture of her sister that Zakariyya had hanging on his wall. “I don’t believe my sister had all that.”

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Lurz shook his head. “She doesn’t look like she has palsy in this picture. What a lovely child.”

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“She did have them seizures,” Deborah said. “And she couldn’t never learn how to use the toilet. But I think she was just deaf. Me and all my brothers got a touch of nerve deafness on account of our mother and father being cousins and having the syphilis. Sometimes I wonder, if somebody taught her sign language, maybe she’d still be alive.”

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Lurz sat in his chair, legs crossed, looking at the photo of Elsie. “You have to be prepared,” he told Deborah, his voice gentle. “Sometimes learning can be just as painful as not knowing.”

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“I’m ready,” Deborah said, nodding.

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“We had a serious asbestos problem,” he said. “Most of our records from the fifties and earlier were contaminated. Instead of cleaning each page of the records to save them, the administration decided to have them carted away in bags and buried.”

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He walked to a storage closet near his desk, its walls lined with shelves and file cabinets. In the back corner he’d crammed a small desk, facing the wall. Lurz had been working at Crownsville since 1964, when he was a student intern in his twenties, and he had a habit of collecting potentially historic documents: patient records, copies of old admissions reports that caught his attention—an infant admitted blind in one eye with facial deformities and no family, a child institutionalized without any apparent psychiatric disorder.

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Lurz disappeared into the closet and began muttering amid loud clunking and shuffling noises. “There were a few … I just had them out a couple weeks ago … Ah! Here we go.” He walked out of the closet carrying a stack of oversized books with thick leather spines and dark green cloth covers. They were warped with age, coated in dust, and filled with thick, yellowed paper.

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“These are autopsy reports,” he said, opening the first book as the scent of mildew filled the room. He’d found them while rummaging in the basement of an abandoned building at the hospital sometime in the eighties, he said. When he’d first opened them, hundreds of bugs scurried from the pages onto his desk.

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Between 1910, when the hospital opened, and the late fifties, when the records were found to be contaminated, tens of thou sands of patients passed through Crownsville. Their records—if they’d survived—could have filled Lurz’s small storage room several times over. Now this stack was all that was left at Crownsville.

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Lurz pulled out a volume that included some reports from 1955, the year Elsie died, and Deborah squealed with excitement.

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“What did you say her full name was?” Lurz asked, running his finger down a list of names written in careful script next to page numbers.

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“Elsie Lacks,” I said, scanning the names over his shoulder as my heart raced. Then, in a daze, I pointed to the words Elsie Lacks on the page and said, “Oh my God! There she is!”

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Deborah gasped, her face suddenly ashen. She closed her eyes, grabbed my arm to steady herself, and started whispering, “Thank you Lord … Thank you Lord.”

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“Wow. This really surprises me,” Lurz said. “It was very unlikely she’d be in here.” Deborah and I began hopping around and clapping. No matter what the record said, at

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least it would tell us something about Elsie’s life, which we figured was better than knowing nothing at all.

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Lurz opened to Elsie’s page, then quickly closed his eyes and pressed the book to his chest before we could see anything. “I’ve never seen a picture in one of these reports,” he whispered.

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He lowered the book so we all could see, and suddenly time seemed to stop. The three of us stood, our heads nearly touching over the page, as Deborah cried, “Oh my baby! She look just like my daughter! … She look just like Davon! … She look just like my father! … She got that smooth olive Lacks skin.”

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Lurz and I just stared, speechless.

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In the photo, Elsie stands in front of a wall painted with numbers for measuring height. Her hair, which Henrietta once spent hours combing and braiding, is frizzy, with thick mats that stop just below the five-foot mark behind her. Her once-beautiful eyes bulge from her head, slightly bruised and almost swollen shut. She stares somewhere just below the camera, crying, her face misshapen and barely recognizable, her nostrils inflamed and ringed with mucus; her lips—swollen to nearly twice their normal size—are surrounded by a deep, dark ring of chapped skin; her tongue is thick and protrudes from her mouth. She appears to be screaming. Her head is twisted unnaturally to the left, chin raised and held in place by a large pair of white hands.

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“She doesn’t want her head like that,” Deborah whispered. “Why are they holding her head like that?”

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No one spoke. We all just stood there, staring at those big white hands wrapped around Elsie’s neck. They were well manicured and feminine, pinky slightly raised—hands you’d see in a commercial for nail polish, not wrapped around the throat of a crying child.

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Deborah laid her old picture of Elsie as a young girl next to the new photo. “Oh, she was beautiful,” Lurz whispered.

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Deborah ran her finger across Elsie’s face in the Crownsville photo. “She looks like she wonderin where I’m at,” she said. “She look like she needs her sister.”

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The photo was attached to the top corner of Elsie’s autopsy report, which Lurz and I began reading, saying occasional phrases out loud: “diagnosis of idiocy” … “directly connected with syphilis” … “self-induced vomiting by thrusting fingers down her throat for six months prior to death.” In the end, it said, she was “vomiting coffee-ground material,” which was probably clotted blood.

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Just as Lurz read the phrase “vomiting coffee-ground material” out loud, a short, round, balding man in a dark business suit stormed into the room telling me to stop taking notes and demanding to know what we were doing there.

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“This is the family of a patient,” Lurz snapped. “They’re here to look at the patient’s medical records.”

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The man paused, looking at Deborah, then at me: a short black woman in her fifties, and a taller white woman in her twenties. Deborah gripped her cane and stared him in the eye with a look that just begged him to mess with her. She reached into her bag and pulled out three pieces of paper: her birth certificate, Elsie’s birth certificate, and the legal document giving her power of attorney over Elsie, something she’d spent months getting, just in case anyone tried to stop her from doing precisely what we were doing.

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She handed them to the man, who grabbed the autopsy report book and started reading. Deborah and I glared at him, both so furious at him for trying to stop us that neither of us realized he was one of the only hospital officials who’d ever tried to protect the Lacks family’s privacy.

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“Can Deborah get a copy of that autopsy report?” I asked Lurz.

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“Yes, she can,” he said, “if she submits a written request.” He grabbed a piece of paper from his desk and handed it to Deborah.

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“What am I supposed to write?” she asked. Lurz began reciting: “I, Deborah Lacks …”

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Within moments she had an official medical record request on a torn piece of paper. She handed it to Lurz and told him, “I need a good blowed-up copy of that picture, too.”

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Before Lurz left to make photocopies, with the bald man close behind, he handed me a stack of photos and documents to look at while he was gone. The first document in the stack was a Washington Post article from 1958, three years after Elsie’s death, with the headline:

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OVERCROWDED HOSPITAL “LOSES” CURABLE PATIENTS

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Lack of Staff at Crownsville Pushes Them to Chronic Stage

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The second I read the title, I flipped the article facedown in my lap. For a moment I considered not showing it to Deborah. I thought maybe I should read it first, so I could prepare her for whatever awful thing we were about to learn. But she grabbed it from my hand and read the headline out loud, then looked up, her eyes dazed.

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“This is nice,” she said, pointing to a large illustration that showed a group of men in various states of despair, holding their heads, lying on the floor, or huddling in corners. “I’d like to have this for my wall.” She handed it back to me and asked me to read it out loud.

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“Are you sure?” I asked. “This is probably going to say some pretty upsetting things. Do you want me to read it first and tell you what it says?”

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“No,” she snapped. “Like he told us, they didn’t have the money to take care of black people.” She walked behind me to follow along over my shoulder as I read, then she scanned the page and pointed to several words on the page: “Gruesome?” she said. “Fearsome black wards?”

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The Crownsville that Elsie died in was far worse than anything Deborah had imagined. Patients arrived from a nearby institution packed in a train car. In 1955, the year Elsie died, the population of Crownsville was at a record high of more than 2,700 patients, nearly eight hundred above maximum capacity. In 1948, the only year figures were available, Crownsville averaged one doctor for every 225 patients, and its death rate was far higher than its discharge rate. Patients were locked in poorly ventilated cell blocks with drains on the floors instead of toilets. Black men, women, and children suffering with everything from dementia and tuberculosis to “nervousness,” “lack of self-confidence,” and epilepsy were packed into every conceivable space, including windowless basement rooms and barred-in porches. When they had beds, they usually slept two or more on a twin mattress, lying head to foot, forced to crawl across a sea of sleeping bodies to reach their beds. Inmates weren’t separated by age or sex, and often included sex offenders. There were riots and homemade weapons. Unruly patients were tied to their beds or secluded in locked rooms.

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I later learned that while Elsie was at Crownsville, scientists often conducted research on patients there without consent, including one study titled “Pneumoencephalographic and skull X-ray studies in 100 epileptics.” Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of fluid. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoenceph alography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. The side effects—crippling headaches, dizziness, seizures, vomiting—lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months. Because pneumoencephalography could cause permanent brain damage and paralysis, it was abandoned in the 1970s.

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There is no evidence that the scientists who did research on patients at Crownsville got consent from either the patients or their parents. Based on the number of patients listed in the pneumoencephalography study and the years it was conducted, Lurz told me later, it most likely involved every epileptic child in the hospital, including Elsie. The same is likely true of at least one other study, called “The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy,” which involved inserting metal probes into patients’ brains.

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Soon after Elsie’s death, a new warden took over at Crownsville and began releasing hundreds of patients who’d been institutionalized unnecessarily. The Washington Post article quoted him saying, “The worst thing you can do to a sick person is close the door and forget about him.”

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When I read that line out loud, Deborah whispered, “We didn’t forget about her. My mother died … nobody told me she was here. I would have got her out.”

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As we left Crownsville, Deborah thanked Lurz for the information, saying, “I’ve been waiting for this a long, long time, Doc.” When he asked if she was okay, her eyes welled with tears and she said, “Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.”

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When we got outside, I asked Deborah if she was sure she was all right. She just laughed like I was crazy. “It was such a good idea we decided to stop here,” she said, then hurried to the parking lot, climbed into her car, and rolled the window down. “Where we goin next?”

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Lurz had mentioned that any other remaining old records from Crowns ville were stored at the Maryland State Archives in Annapolis, about seven miles away. He didn’t think they’d have any from the fifties, but figured it wouldn’t hurt to look.

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“We goin to Annapolis see if they got more of my sister medical records?” “I don’t know if that’s a good idea,” I said. “Don’t you want a break?”

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“No way!” she yelled. “We got lots more reportin to do—we just gettin hot now!” She screeched off in her car, smiling and waving the new picture of her sister out the window at me as I jumped in my car to follow.

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About ten minutes later, as we pulled into the parking lot of the State Archives, Deborah bounced in the seat of her car, gospel music blaring so loud I could hear it with my windows up. When we walked inside, she went straight to the reception desk, reached into her bag, pulled out her mother’s medical records, and waved them in the air above her head, saying, “They call my mother HeLa! She’s in all the computers!”

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I was relieved when the receptionist said the archives didn’t have Elsie’s medical records. I didn’t know how much more Deborah could take, and I was scared of what we’d find.

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The rest of the day was a blur. As we drove to Clover, each time we stopped, Deborah leapt from her car, clutching the new photo of her sister and thrusting it into the face of every person we met: a woman on a street corner, the man pumping our gas, a pastor at a smallchurch, our waitresses. Each time, she said, “Hi, my name’s Deborah and this is my reporter, you probably heard of us, my mama’s in history with the cells, and we just found this picture of my sister!”

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Each time, the reaction was the same: sheer horror. But Deborah didn’t notice. She just smiled and laughed, saying, “I’m so happy our reportin is going so good!”

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As the day went on, the story behind the picture grew more elaborate. “She’s a little puffy from cryin because she misses my mother,” she said at one point. Another time she told a woman, “My sister’s upset because she’s been looking for me but can’t find me.”

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Occasionally she’d pull over to the side of the road and motion for me to pull up beside her so she could tell me various ideas she’d come up with as she drove. At one point she’d decided she needed to get a safe deposit box for her mother’s Bible and hair; later she asked if she needed to copyright Henrietta’s signature so no one would steal it. At a gas station, while we waited in line for the bathroom, she pulled a hammer from her backpack and said, “I wish the family would give me the home-house so I can make it a historical place. But they won’t, so I’m gonna take the doorknob so at least I have something from it.”

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At one point, Deborah climbed from her car looking near tears. “I been havin a hard time keepin my eyes on that road,” she said. “I just keep lookin at the picture of my sister.” She’d been driving with both of Elsie’s pictures on the passenger seat beside her, staring at them as she drove. “I can’t get all these thoughts outta my head. I just keep thinkin about what she must’ve gone through in those years before she died.”

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I wanted to take the picture from her so she’d stop torturing herself with it, but she wouldn’t have let me if I’d tried. Instead, I just kept saying maybe we should go home, it had been an intense couple days, and perhaps she wasn’t ready for so much reporting at once. But each time, Deborah told me I was crazy if I thought she was stopping now. So we kept going.

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At several points during the day, Deborah said I should take her mother’s medical records into my hotel room when we stopped for the night. “I know you’ll have to look at every page, take notes and everything, cause you need all the facts.” And finally, when we checked into a hotel somewhere between Annapolis and Clover around nine o’clock at night, she gave them to me.

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“I’m going to sleep,” she said, walking into the room next to mine. “Knock yourself out.”

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34 – The Medical Records (2001)

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A few minutes later, Deborah pounded on my door. She’d changed into an enormous white T-shirt that hung past her knees—on it was a picture of a stick-figure woman taking cookies out of an oven, and the word GRANDMA in big childlike print.

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“I decided I’m not going to bed,” she said matter-of-factly. “I want to look at that stuff with you.” She was jittery and twitchy, like she’d just had several shots of espresso. In one hand she clutched the Crownsville picture of Elsie; with the other she grabbed the bag filled with her mother’s medical records off the dresser where I’d put it. She dumped the bag’s contents on my bed just as she’d done the first night we met.

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“Let’s get busy,” she said.

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There were more than a hundred pages, many of them crumpled, folded, or torn, all of them out of order. I stood staring for a long moment, stunned and overwhelmed, then said maybe we could sort through it together, then I could find somewhere to photocopy what I’d need.

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“No!” Deborah yelled, then smiled a nervous smile. “We can just read it all here and you can take notes.”

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“That would take days,” I said.

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“No it won’t,” Deborah said, climbing on all fours across the pile of papers, and sitting cross-legged in the center of the bed.

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I pulled up an armchair, opened my laptop, and started sorting. There was a land deed from the small chunk of Clover property Deborah bought with two thousand dollars from her father’s asbestos settle ment. There was a 1997 newspaper mug shot of Lawrence’s son with a caption that said, WANTED. LAWRENCE LACKS, ROBBERY W/DEADLY WEAPON. There were order forms for buying HeLa cells online, receipts, newsletters from Deborah’s church, and seemingly endless copies of the photo of Henrietta, hands on hips. And therewere dozens of notebook pages where Deborah had written definitions of scientific and legal terms, and poems about her life:

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cancer
check up
can’t afford
white and rich get it
my mother was black
black poor people don’t have the money to pay for it
mad yes I am mad
we were used by taking our blood and lied to
We had to pay for our own medical, can you relieve that.
John Hopkin Hospital and all other places, that has my mother cells, don’t give her
Nothing,

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As I read, Deborah grabbed several photocopied pages from a genealogy how-to book and held them up for me to see, saying, “That’s how I knew to get power of attorney and bring all that stuff to get my sister information at Crownsville. They didn’t know who they was foolin’ with!” As she talked, she watched my hands moving through the pile of papers.

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I held a page of the records close to my face to make out the small script, then began reading out loud, “ ‘This twenty-eight-year-old’ … something … I can’t read the handwriting … ‘positive Rh.’” The entry was dated November 2, 1949.

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“Oh wow!” I said suddenly. “This is three days before you were born—your mom’s pregnant with you here.”

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“What? Oh my god!” Deborah screamed, snatching the paper and staring at it, mouth wide. “What else does it say?”

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It was a normal checkup, I told her. “Look here,” I said, pointing at the page. “Her cervix is two centimeters dilated … She’s getting ready to have you.”

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Deborah bounced on the bed, clapped her hands, and grabbed another page from the medical records.

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“Read this one!”

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The date was February 6, 1951. “This is about a week after she first went to the hospital with her cervical cancer,” I said. “She’s waking up from anesthesia after getting her biopsy. It says she feels fine.”

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For the next few hours, Deborah pulled papers off the pile for me to read and sort. One moment she’d screech with joy over a fact I’d found, the next she’d panic over a new fact that didn’t sit well, or at the sight of me holding a page of her mother’s medical records. Each time she panicked, she’d pat the bed and say, “Where’s my sister autopsy report?” or “Oh no, where’d I put my room key?”

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Occasionally she stashed papers under the pillow, then pulled them out when she decided it was okay for me to see them. “Here’s my mother autopsy,” she said at one point. A few minutes later she handed me a page she said was her favorite because it had her mother’s signature on it—the only piece of Henrietta’s handwriting on record. It was the consent form she’d signed before her radium treatment, when the original HeLa sample was taken.

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Eventually, Deborah grew quiet. She lay on her side and curled herself around the Crownsville picture of Elsie for so long, I thought she’d fallen asleep. Then she whispered, “Oh my god. I don’t like the way she got her neck.” She held up the picture and pointed to the white hands.

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“No,” I said. “I don’t like that either.”

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“I know you was hopin I didn’t notice that, weren’t you?”

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“No. I knew you noticed.”

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She laid her head back down again. We kept on like this for hours, me reading and taking notes, Deborah staring at Elsie’s picture in long silences broken only by her sparse commentary: “My sister look scared.” … “I don’t like that look on her face.” … “She was chokin herself?” … “I guess after she realized she wasn’t going to see my mother no more, she just gave up.” Occasionally she shook her head hard, like she was trying to snap herself out of something.

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Eventually I leaned back in my chair and rubbed my eyes. It was the middle of the night and I still had a big pile of paper to sort through.

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“You might think about getting yourself another copy of your mother’s medical record and stapling it with all the pages in order to keep it all straight,” I said.

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Deborah squinted at me, suddenly suspicious. She moved across the room to the other bed, where she lay on her stomach and started reading her sister’s autopsy report. A few minutes later, she jumped up and grabbed her dictionary.

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“They diagnosed my sister with idiocy?” she said, then started reading the definition out loud. “‘Idiocy: utterly senseless or foolish.’” She threw down the dictionary. “That’s what they say was wrong with my sister? She had foolish? She was an idiot? How can they do that?”

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I told her that doctors used to use the word idiocy to refer to mental retardation, and to the brain damage that accompanied hereditary syphilis. “It was sort of a generic word to describe someone who was slow,” I said.

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She sat down next to me and pointed to a different word in her sister’s autopsy report. “What does this word mean?” she asked, and I told her. Then her face fell, her jaw slack, and she whispered, “I don’t want you puttin that word in the book.”

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“I won’t,” I said, and then I made a mistake. I smiled. Not because I thought it was funny, but because I thought it was sweet that she was protective of her sister. She’d never told me something was off limits for the book, and this was a word I would never have included—to me, it didn’t seem relevant. So I smiled.

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Deborah glared at me. “Don’t you put that in the book!” she snapped.

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“I won’t,” I told her, and I meant it. But I was still smiling, now more from nervousness than anything else.

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“You’re lying,” Deborah yelled, flipping off my tape recorder and clenching her fists.

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