The Immortal Life of Henrietta Lacks (40 page)

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.

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.”

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.”

     
A
s 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.”

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?”

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.

“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?”

“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.

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!”

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.

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 small church, 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!”

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!”

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.”

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.”

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.”

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.

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.

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

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.

“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.

“Let’s get busy,” she said.

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.

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

“That would take days,” I said.

“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.

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 there were dozens of notebook pages where Deborah had written definitions of scientific and legal terms, and poems about her life:

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.

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.

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

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

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.”

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

“Read this one!”

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.”

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?”

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.

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.

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

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

“No. I knew you noticed.”

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.

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.

“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.

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.

“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?”

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.

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.”

“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.

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

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

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

“I’m not, I swear, look, I’ll say it on tape and you can sue me if I use it.” I clicked the recorder on, said into the mic that I wouldn’t put that word in the book, then turned it off.