The Immortal Life of Henrietta Lacks (40 page)

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.

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

“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.

“What am I supposed to write?” she asked.

Lurz began reciting: “I, Deborah Lacks …”

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.”

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:

OVERCROWDED HOSPITAL “LOSES” CURABLE PATIENTS
Lack of Staff at Crownsville Pushes Them to Chronic Stage

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.

“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.

“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?”

“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?”

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.

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. Pneumoencephalography 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.

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 Crownsville 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.”

34
The Medical Records

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 settlement. 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:

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
.

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.