The Immortal Life Of Henrietta Lacks Part 33

Lurz opened to Elsie's page, then quickly closed his eyes and pressed the book to his chest before we could see anything. "I've never seen a picture in one of these reports," he whispered.

He lowered the book so we all could see, and suddenly time seemed to stop. The three of us stood, our heads nearly touching over the page, as Deborah cried, "Oh my baby! She look just like my daughter! ... She look just like Davon! ... She look just like my father! ... She got that smooth olive Lacks skin."

Lurz and I just stared, speechless.

In the photo, Elsie stands in front of a wall painted with numbers for measuring height. Her hair, which Henrietta once spent hours combing and braiding, is frizzy, with thick mats that stop just below the five-foot mark behind her. Her once-beautiful eyes bulge from her head, slightly bruised and almost swollen shut. She stares somewhere just below the camera, crying, her face misshapen and barely recognizable, her nostrils inflamed and ringed with mucus; her lips-swollen to nearly twice their normal size-are surrounded by a deep, dark ring of chapped skin; her tongue is thick and protrudes from her mouth. She appears to be screaming. Her head is twisted unnaturally to the left, chin raised and held in place by a large pair of white hands.

"She doesn't want her head like that," Deborah whispered. "Why are they holding her head like that?"

No one spoke. We all just stood there, staring at those big white hands wrapped around Elsie's neck. They were well manicured and feminine, pinky slightly raised-hands you'd see in a commercial for nail polish, not wrapped around the throat of a crying child.

Deborah laid her old picture of Elsie as a young girl next to the new photo.

"Oh, she was beautiful," Lurz whispered.

Deborah ran her finger across Elsie's face in the Crownsville photo. "She looks like she wonderin where I'm at," she said. "She look like she needs her sister."

The photo was attached to the top corner of Elsie's autopsy report, which Lurz and I began reading, saying occasional phrases out loud: "diagnosis of idiocy" ... "directly connected with syphilis" ... "self-induced vomiting by thrusting fingers down her throat for six months prior to death." In the end, it said, she was "vomiting coffee-ground material," which was probably clotted blood.

Just as Lurz read the phrase "vomiting coffee-ground material" out loud, a short, round, balding man in a dark business suit stormed into the room telling me to stop taking notes and demanding to know what we were doing there.

"This is the family of a patient," Lurz snapped. "They're here to look at the patient's medical records."

The man paused, looking at Deborah, then at me: a short black woman in her fifties, and a taller white woman in her twenties. Deborah gripped her cane and stared him in the eye with a look that just begged him to mess with her. She reached into her bag and pulled out three pieces of paper: her birth certificate, Elsie's birth certificate, and the legal doc.u.ment giving her power of attorney over Elsie, something she'd spent months getting, just in case anyone tried to stop her from doing precisely what we were doing.

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 doc.u.ments to look at while he was gone. The first doc.u.ment in the stack was a Was.h.i.+ngton 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 t.i.tle, 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 ill.u.s.tration 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 inst.i.tution 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 s.p.a.ce, including windowless bas.e.m.e.nt 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 s.e.x, and often included s.e.x 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 t.i.tled "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 Psych.o.m.otor 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 inst.i.tutionalized unnecessarily. The Was.h.i.+ngton 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 ... n.o.body told me she was here. I would have got her out."

As 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 att.i.tude. 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 doork.n.o.b 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 pa.s.senger 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."