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Deborah and Zakariyya accompanied Skloot to visit Lengauer at Hopkins in order to see the HeLa cells. Day’s health had deteriorated too much to make the trip, Sonny had to work, and Lawrence still wanted to sue Hopkins.
Lengauer thanked them for coming and acknowledged how difficult it must have been for Deborah and Zakariyya to come into a Hopkins lab. He showed them the freezer where HeLa samples were kept and noted that the HeLa contamination seemed like poetic justice for science’s mistreatment of the Lacks family. He handed Deborah a vial of HeLa cells, which Deborah kissed. Lengauer then showed Deborah and Zakariyya how to look at the cells under a microscope. They spent the next half hour learning about cells. Lengauer answered many of their questions about Henrietta’s illness and cells. Deborah and Zakariyya were shocked to hear Lengauer admit that Johns Hopkins had made a mistake in their treatment of the Lacks family. He also believed that the family should be entitled to some of the profit made from HeLa cells. The meeting ended with Lengauer giving both Lackses his phone number and telling them to call him with any other questions about cells.
The next day, Skloot and Deborah went to Crownsville to see if they could find any record of what happened to Elsie. They met with Paul Lurz, director of performance and improvement. He warned Deborah that Crownsville in the 40s and 50s, when it was called the Hospital for the Negro Insane, had not been a good place.
Deborah explained that Elsie had frequent seizures, but she thought some of Elsie’s problems may have stemmed from deafness. Lurz managed to find Elsie’s autopsy report along with a photograph. The photograph, in contrast to Elsie’s childhood photos, was horrific, and showed that Elsie clearly suffered neglect.
Deborah submitted a written request for a photocopy of Elsie’s autopsy report. While Lurz made copies, he showed her a 1958 newspaper article about how overcrowding at the hospital led to the death of patients. The details were harrowing. Doctors conducted research on patients without consent, including a painful procedure called pneumoencephalography, which involves replacing the fluid that protects the brain with helium in order to x-ray the skull. The hospital conducted pneumoencephalography on epileptic children, and Elsie likely would have been included.
Despite Deborah’s clear shock, she insisted she still wanted to go to the Maryland State Records Archive to see if Elsie’s medical records had survived. They hadn’t. Deborah clearly wasn’t handling the stress of the day well. At the end of the day, when they had checked into their hotel rooms, Deborah brought Skloot Henrietta’s medical records.
Deborah watched Skloot go through the hundreds of pages of medical records. Skloot asked if she could photocopy the important pages, but Deborah said no. Deborah’s behavior was erratic throughout the night, occasionally joyful over a new fact or panicked about Skloot holding the pages.
Deborah began to talk about the photograph of Elsie and how upset it made her. She began to look up the words in Elsie’s autopsy report. When she found a word she didn’t like, she told Skloot not to put it in the book. Skloot promised not to and smiled at how protective Deborah was being. However, Deborah interpreted this as her not taking the promise seriously and grew suspicious again. Skloot yelled at Deborah. Deborah commented that she’d worried because Skloot never got angry or lost her patience. Deborah then explained the Cofield ordeal. She made Skloot promise not to copy all of the records or put all the information in the book. Skloot agreed. By the end of the night, Deborah had begun to break out in hives.
The next morning, at breakfast, Deborah reassured Skloot that everything was okay.
Deborah wasn’t concerned about the hives. Down in Clover, Deborah’s erratic behavior continued. Deborah’s cousin, Gary, told her to relax. Deborah continued to panic, bringing up her fears about Henrietta and Elsie. Gary believed he could channel God, and began to do so. He started to shake and then hugged Deborah and sang. He called upon God to take the burden of the cells from Deborah. As she watched Gary and Deborah, Skloot felt guilty that she had gotten Deborah into this state. Gary continued the ceremony. He declared that the Lord had sent Skloot to take on the burden of the cells so Deborah didn’t have to. After the ceremony, Deborah felt better and acted calmer. She thanked Gary for helping her.
The next day, Skloot talked to Gary while Deborah went to the doctor. Gary gave Skloot a Bible and told her that Henrietta’s cells were proof that immortality was possible. He believed that the Lord chose Henrietta to serve as an angel, and the cells are the form he chose for her. At that moment, Skloot understood why many in the Lacks family found religion’s explanation for Henrietta’s immortality more concrete than the ones given by science.
The meeting with Lengauer marks the first time a Hopkins researcher has treated any of the Lacks family with compassion and respect. Lengauer actively acknowledges the wrongs Gey, Jones, and TeLinde did without prompting, demonstrating a sincere concern for the suffering of the Lacks family. He did not condescend or dismiss Zakariyya and Deborah’s questions about HeLa cells and was clear and forthcoming with his answers. In contrast to the scientists who wanted to reclassify HeLa as another species, Lengauer dealt with his discomfort at a historical wrong by accepting it and trying to create some small measure of justice. His behavior serves, then, as a model for how doctors and scientists could interact with people who are patients or research participants. Moreover, Lengauer showing Zakariyya and Deborah HeLa cells symbolizes the first moment that Henrietta’s children come into contact with their mother’s scientific legacy, which they have been actively excluded from until then. Zakariyya and Deborah become part of Henrietta’s scientific legacy, and Deborah’s kissing the vial of cells symbolizes the coalescing of Henrietta’s personal and scientific legacies through her children being granted access to her cells.
The horror of what happened to Elsie is a stark contrast to Zakariyya and Deborah’s experience at Hopkins with Lengauer, and emphasizes once again the dark side of medical research in the US, a long history that is still not fully acknowledged or remedied. Elsie’s story highlights how the combination of race, poverty, and mental illness made her particularly vulnerable and how easily she was forgotten and erased by the institutions and professionals entrusted to care for her. While Henrietta’s cells made her memorable to the world, Elsie, as a disabled black child, was needlessly and fruitlessly experimented on, and then neglected and erased to history. Hopkins doctors required Day’s consent to perform an autopsy on Henrietta, but there is no mention in the book about whether anyone obtained consent to perform an autopsy on Elsie, thus highlighting how she was violated in both life and death. Furthermore, nobody was informed about Elsie’s condition or treatment until Deborah and Skloot began asking after her and had the resources together to persist in their search.
Deborah and Skloot’s skirmish and reconciliation over Henrietta’s medical records symbolizes a delicate moment of trust and how difficult it is to earn and maintain that trust in the face of structural racism and exploitation. The timing of this interaction, right after the visit with Lengauer and the discovery of Elsie’s autopsy report, is significant because Skloot had fulfilled her promise to help Deborah learn about both HeLa and Elsie. However, Deborah is justifiably still afraid that Henrietta’s memory will once again be dishonored and stolen by Skloot because Skloot looks like the people who have caused suffering for the Lacks family before. Skloot’s abiding patience unwittingly triggers Deborah’s fears because of Cofield’s easy charm and likability, which highlights that working with people suffering from trauma is a delicate and complex endeavor. Skloot’s persistence shows her commitment to journalistic ethics. In this chapter and others, Skloot adapts to Deborah’s needs, responding in the moment to her fears and concerns based on the Lacks family’s past experiences. As the person with more social and economic privilege in the situation, Skloot demonstrates constant awareness of her identity as a white woman and responsibility as a journalist.
We can read the soul cleansing ceremony as the climax of the book because it shows Deborah processing and making peace with the answers she received. After the extremely emotional day that had come before, Gary’s insistence that she had to let go of the burden of the cells reminded her that she couldn’t change what happened now that she had her answers. The ceremony emphasizes the immensity of what Deborah has learned and the impossibility of holding all of it herself. As we have seen throughout the book, what happened to Henrietta encompasses so many complicated issues of medical ethics, structural racism, legacy, and accountability that it is not possible to resolve these issues simply by knowing what happened. These issues are bigger than one individual or even one institution. Gary’s invocation and channeling of God highlights that sheer enormity and scale of everything that Deborah and Skloot have uncovered. In this light, we can read Gary’s placing of the burden on Skloot as a message that Skloot, as someone with privilege and power, must use that privilege and power to further the story, and bear the responsibility in the way that Deborah has borne the suffering.
Religion offers the Lacks family a way to process what happened that comforts and sustains them. Gary’s description of HeLa cells as Henrietta’s heavenly body provides a comforting explanation for why the cells have continued to persist and why they have done good in the world. Furthermore, the image of HeLa cells as Henrietta’s heavenly body combines Henrietta as a person with her scientific legacy, which matches the family’s view of the cells. Religion is a more familiar and comforting framework for the Lacks family than science, which represents so much violation, exploitation, and exclusion. Gary’s connection of the immortality of the afterlife to HeLa cells demonstrates how religion provides a symbolic vocabulary that the family can use to process and articulate their experiences and what Henrietta, her legacy, and HeLa cells mean to and for them. Furthermore, many members of their family, like Gary and Pullum, are preachers themselves, so that, unlike science, which they have been denied access to, the Lacks family can feel authoritative in their understanding of religion.
Ace your assignments with our guide to The Immortal Life of Henrietta Lacks!