The Immortal Life Of Henrietta Lacks Part 5

"Hennie," she whispered, "they burnt you black as tar."

Henrietta just nodded and said, "Lord, it just feels like that blackness be spreadin all inside me."

CHAPTER 6

"Lady's on the Phone"

Eleven years after learning about Henrietta in Defler's cla.s.sroom-on my twenty-seventh birthday-I stumbled on a collection of scientific papers from something called "The HeLa Cancer Control Symposium" at Morehouse School of Medicine in Atlanta, one of the oldest historically black colleges in the country. The symposium had been organized in Henrietta's honor by Roland Pattillo, a professor of gynecology at Morehouse who'd been one of George Gey's only African-American students.

When I called Roland Pattillo to see what he knew about Henrietta, I told him I was writing a book about her.

"Oh you are?" he said, laughing a slow, rumbling laugh that said, Oh child, you have no idea what you're getting into. "Henrietta's family won't talk to you. They've had a terrible time with the HeLa cells."

"You know her family?" I said. "Can you put me in touch with them?

"I do have the ability to put you in touch with them, but you need to answer a few questions, starting with 'Why should I?' "

For the next hour, Pattillo grilled me about my intentions. As I told him about the history of my HeLa obsession, he grumbled and sighed, letting out occasional mmmmmms and wellllllls.

Eventually he said, "Correct me if I'm wrong, but you are white."

"Is it that obvious?"

"Yes," he said. "What do you know about African-Americans and science?"

I told him about the Tuskegee syphilis study like I was giving an oral report in history cla.s.s: It started in the thirties, when U.S. Public Health Service researchers at the Tuskegee Inst.i.tute decided to study how syphilis killed, from infection to death. They recruited hundreds of African-American men with syphilis, then watched them die slow, painful, and preventable deaths, even after they realized penicillin could cure them. The research subjects didn't ask questions. They were poor and uneducated, and the researchers offered incentives: free physical exams, hot meals, and rides into town on clinic days, plus fifty-dollar burial stipends for their families when the men died. The researchers chose black subjects because they, like many whites at the time, believed black people were "a notoriously syphilis-soaked race."

The public didn't learn about the Tuskegee study until the seventies, after hundreds of men enrolled in it had already died. The news spread like pox through black communities: doctors were doing research on black people, lying to them, and watching them die. Rumors started circulating that the doctors had actually injected the men with syphilis in order to study them.

"What else?" Pattillo grumbled.

I told him I'd heard about so-called Mississippi Appendectomies, unnecessary hysterectomies performed on poor black women to stop them from reproducing, and to give young doctors a chance to practice the procedure. I'd also read about the lack of funding for research into sickle-cell anemia, a disease that affected blacks almost exclusively.

"It's interesting that you called when you did," he said. "I'm organizing the next HeLa conference, and when the phone rang, I'd just sat down at my desk and typed the words Henrietta Lacks on my screen." We both laughed. It must be a sign, we said; perhaps Henrietta wanted us to talk.

"Deborah is Henrietta's baby girl," he said, very matter-of-fact. "The family calls her Dale. She's almost fifty now, still living in Baltimore, with grandchildren of her own. Henrietta's husband is still alive. He's around eighty-four-still goes to the clinics at Johns Hopkins." He dropped this like a tease.

"Did you know Henrietta had an epileptic daughter?" Pattillo asked.

"No."

"She died at fifteen, soon after Henrietta's death. Deborah is the only daughter left," he said. "She came near a stroke recently because of the agony she's gone through regarding inquiries into her mother's death and those cells. I won't be a part of anyone doing that to her again."

I started to speak, but he interrupted me.

"I need to go see patients now," he said abruptly. "I'm not ready to put you in touch with the family yet. But I think you're honest about your intentions. We will talk again after I think. Call back tomorrow."

After three straight days of grilling, Pattillo finally decided to give me Deborah's phone number. But first, he said, there were a few things I needed to know. He lowered his voice and rattled off a list of dos and don'ts for dealing with Deborah Lacks: Don't be aggressive. Do be honest. Don't be clinical, don't try to force her into anything, don't talk down to her, she hates that. Do be compa.s.sionate, don't forget that she's been through a lot with these cells, do have patience. "You'll need that more than anything," he told me.

Moments after hanging up the phone with Pattillo, his list of dos and don'ts in my hand, I dialed Deborah's number, then paced as her phone rang. When she whispered h.e.l.lo, I blurted out, "I'm so excited you answered because I've been wanting to talk to you for years! I'm writing a book about your mother!"

"Huh?" she said.

I didn't know that Deborah was nearly deaf-she relied heavily on lip reading and couldn't follow anyone who talked fast.

I took a deep breath and tried again, forcing myself to sound out every syllable.

"Hi, my name is Rebecca."

"How ya doin?" she said, weary but warm.

"I'm very excited to talk to you."

"Mmmhmm," she said, like she'd heard that line many times before.

I told her again that I wanted to write a book about her mother and said I was surprised no one seemed to know anything about her, even though her cells were so important for science.

Deborah sat silent for a long moment, then screamed, "That's right!" She giggled and started talking like we'd known each other for years. "Everything always just about the cells and don't even worry about her name and was HeLa even a person. So hallelujah! I think a book would be great!"

This was not what I'd expected.

I was afraid to say anything that might make her stop talking, so I simply said, "Great." And that was the last word I spoke until the end of our call. I didn't ask a single question, just took notes as fast as I could.

Deborah crammed a lifetime of information into a manic and confusing forty-five minutes that jumped without warning, and in no particular order, from the 1920s to the 1990s, from stories of her father to her grandfather, cousins, mother, and total strangers.

"n.o.body never said nothing," she told me. "I mean, where my mother clothes at? Where my mother shoes? I knew about her watch and ring, but it was stolen. That was after my brother killed that boy." She talked about a man she didn't name, saying, "I didn't think it was fit for him to steal my mother medical record and autopsy papers. He was in prison for fifteen years in Alabama. Now he sayin John Hopkin killed my mother and them white doctors experimented on her cause she was black.

"My nerve broke down," she said. "I just couldn't take it. My speech is coming back a little better-I almost had two strokes in two weeks cause of all that stuff with my mother cells."

Then suddenly she was talking about her family history, saying something about "the Hospital for Crazy Negroes" and her mother's great-grandfather having been a slave owner. "We all mixed. And one of my mother sisters converted to Puerto Rican."

Again and again, she said, "I can't take it anymore," and "Who are we supposed to trust now?" More than anything, she told me, she wanted to learn about her mother and what her cells had done for science. She said people had been promising her information for decades and never delivering it. "I'm sick of it," she said. "You know what I really want? I want to know, what did my mother smell like? For all my life I just don't know anything, not even the little common little things, like what color she like? Did she like to dance? Did she breastfeed me? Lord, I'd like to know that. But n.o.body ever say nothing."

She laughed and said, "I tell you one thing-the story's not over yet. You got your work cut out for you, girl. This thing's crazy enough for three books!"

Then someone walked through her front door and Deborah yelled straight into the receiver, "Good morning! I got mail?" She sounded panicked by the idea of it. "Oh my G.o.d! Oh no! Mail?!"

"Okay, Miss Rebecca," she said. "I got to go. You call me Monday, promise? Okay, dear. G.o.d bless. Bye-bye."

She hung up and I sat stunned, receiver crooked in my neck, frantically scribbling notes I didn't understand, like brother = murder, mail = bad, man stole Henrietta's medical records, and Hospital for Negro Insane?

When I called Deborah back as promised, she sounded like a different person. Her voice was monotone, depressed, and slurred, like she was heavily sedated.