The Immortal Life of Henrietta Lacks (37 page)

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 probably helped make.”

     
E
ventually, 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.”

32
“All That’s My Mother”

B
y 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.”