The Immortal Life Of Henrietta Lacks Part 30

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 G.o.ddess who's part dead and part alive, with "immeasurable" intelligence, "superhuman" strength, "G.o.dlike" 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 G.o.ddess of death, who lives trapped in a land between h.e.l.l and the living. Deborah figured that G.o.ddess 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 probably 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."

"Them people don't know nothing about science," she told me. "Just havin HPV don't mean my mother was loose. Most people got it-I read about it on the Internet."

Then, in April 2001, nearly a year after we first met, Deborah called to tell me that "the president of a cancer club" had called wanting to put her on stage at an event honoring her mother. She was worried, she said, and she wanted me to find out if he was legit.

He turned out to be Franklin Salisbury Jr., president of the National Foundation for Cancer Research. He'd decided to hold the foundation's 2001 conference in Henrietta's honor. On September 13, seventy top cancer researchers from around the world would gather to present their research, he said, and hundreds of people would attend, including the mayor of Washington, D.C., and the surgeon general. He hoped Deborah would speak there, and accept a plaque in her mother's honor.

"I understand that the family feels very abused," he told me. "We can't give them money, but I'm hoping this conference will set the historic record straight and help make them feel better, even if we are fifty years late."

When I explained this to Deborah, she was ecstatic. It would be just like Pattillo's conference in Atlanta, she said, only bigger. She immediately started planning what she'd wear and asking questions about what the researchers would be talking about. And she worried again about whether she'd be safe on stage, or whether there'd be a sniper waiting for her.

"What if they think I'm going to cause trouble about them taking the cells or something?"

"I don't think you need to worry about that," I said. "The scientists are excited to meet you." Besides, I told her, it was going to be in a federal building with high security.

"Okay," she said. "But first I want to go see my mother cells, so I know what everybody's talkin about at the conference."

When we hung up I went to call Christoph Lengauer, the cancer researcher who'd given Deborah the painted chromosome picture, but before I could dig out his number, my phone rang again. It was Deborah, crying. I thought she was panicking, changing her mind about seeing the cells. But instead she wailed, "Oh my baby! Lord help him, they got him with fingerprints on a pizza box."

Her son Alfred and a friend had been on a crime spree, robbing at least five liquor stores at gunpoint. Security cameras caught Alfred on tape yelling at a store clerk and waving a bottle of Wild Irish Rose above his head. He'd stolen a twelve-ounce bottle of beer, one bottle of Wild Irish Rose, two packs of Newport cigarettes, and about a hundred dollars in cash. The police arrested him in front of his house and threw him in the car while his son, Little Alfred, watched from the lawn.

"I still want to go see them cells," Deborah said, sobbing. "I ain't gonna let this stop me from learning about my mother and my sister."

CHAPTER 32

"All That's My Mother"

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."

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."

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.

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 oversized 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."

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.

I told her I did too.

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

"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 gla.s.ses were so tight they'd etched deep grooves into his head, but he couldn't afford new ones.

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

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

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 s.h.a.ggy light brown hair. He shook my hand and Deborah's, then reached for Zakariyya's. But Zakariyya didn't move.

"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 b.u.t.ton. "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."

"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."

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.

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.

"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.

"It's all full of her cells," he said.

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.

"Oh G.o.d," she gasped. "I can't believe all that's my mother." Zakariyya just stared in silence.