The Maladjusted Book Club: HeLa, Ethics, and Immortality

I finished reading my first book in third grade. I handed in one of many assignments, and in the quiet, grey room, summer break imminent, I took the novel out of my desk and lay it on my lap. For some reason, I felt the need to hide it, to secretly turn the final pages. As I approached the end of a story about a girl who wanted to play soccer with the boys, I was no longer comprehending the words. I was too excited at the empty white space of the last page. I had done it, finished a book. In my young life, it was one of the first times I felt pride in an individual accomplishment.

From that point on, books became an escape for me. I gravitated toward fiction, toward romance, and later, thriller. Each week, I’d ride my bike to the trailer library (yes, you read that right) a couple of streets away in my barren South Jersey town, and I’d peruse the shelf next to the door. The ones I chose always had a red heart on the spine, and the stories were about teenage girls slipping into cardigans and putting on mascara, hoping to capture the attention of a cute boy. Usually, they did, and in the process, gained self-confidence and acceptance of their flaws. I dove into whatever was available, pushing aside The Babysitter’s Club series (always a critic) for the blonde-haired Sweet Valley High twins, who drove convertibles and went shopping and eventually recovered from Jessica Wakefield’s escapades. Even those books, though, were were the equivalent of eating a few bags of Sour Patch Kids, so I turned to vampires and magic mirrors and ghosts in the books of R.L. Stine and Christopher Pike. Once, I even got my hands on a copy of Stephen King’s Carrie, and, despite my apprehension, read through chapters about tampons and sex and drugs and cursing. I had discovered a secret world behind the pages of books. They became a compulsion, a way to cope with whatever anxiety the real world brought.

Books have become more than that for me, now. I read to escape, of course, but I also read to learn, to study the writer’s craft, to discuss, to teach, and to connect. Because more than anything else, books are a way to connect to other human beings, whether fictional or real. The people in books get into our hearts, they plant themselves like seeds in our souls. I’ve found that my soul has very fertile soil.

I spent the first chapters of Rebecca Skloot’s The Immortal Life of Henrietta Lacks trying to escape it, rather than seeking it out as an antidote to daily troubles. I spent the last chapters crying. The story, while beautifully told, is so sad. Before scientists took Henrietta’s cells, she was a poor woman trying to mother her growing family. She became sexually active early in life, married her cousin, and started having babies. Her husband’s adultery made her contract viruses like syphilis and HPV. Over time, the pain in her abdomen became unbearable, and she endured radiation treatment secretly, without telling her family. She was so used to struggling and bearing burdens by herself, and hoped that she’d be cured and could one day see her children grow. Perhaps if she ignored the word “cancer,” she didn’t really have it.

But Henrietta’s cancer was so invasive that it astounded doctors both then, at the time of her death in the 1950′s, and now. She died in pain, in heartache, her only wish being that her children would be taken care of.

Because of the way Skloot structured the book, then, we read about the lives of Henrietta’s children from her perspective. I read about Deborah and Joey as a mother, heartbroken by the abuse they endured by their father’s girlfriend, the sexual abuse Deborah suffered from a man in her neighborhood. They needed their mother. Everyone does. But she was gone.

Of course, Skloot’s work shows that Henrietta was alive in another way. Scientists marveled at the way her cells reproduced, and they began to use them in all sorts of experiments for decades after. Eventually, an industry was built to ship and use the cells, all while the Lacks children grew and struggled. To this day, they still don’t have health insurance.

What strikes me about this story is so many things, but one is how much our ancestry means to our identity. The people who came before us, the heritage that is passed own, is more than just a story. It seems to be part of our bodies, our spirits, our cells. The pain that Henrietta experienced was visible psychologically and physically in her children, and I can only use the words of her family—”Thank God”—that Deborah’s grandchildren are starting to break away from that pain through knowledge and education. And hope.

Deborah, Henrietta’s daughter who works closely with the author, worries that she can’t trust Skloot because she has been victimized and used so often by scientists and even a con artist in the past. But by working on the book, she starts to discover a way to reach her mother. She holds on to her bible, a strand of hair, a blown up picture of her cells. She even sees those cells in a microscope. Later, she finds out about the horrible treatment of her sister, who was committed to an institution in the 1950′s under the banner of “idiocy.” Even though the knowledge of cruelty toward her sister is painful, she feels better to have some connection to her, some way—even though only through a troubling photo—to know her. Through research, Deborah can finally connect with her family and her past, and when she dies (before the book is published), she dies in peace.

I loved the way that the Lacks family thinks of Henrietta’s cells as part of her spirit, as the work of God. In the chapter, “Soul Cleansing,” Deborah’s cousin Gary tries to heal Deborah with his touch, his faith, and the words of the Bible. He helps her lift the burdens of the troubling information she’s found. After Deborah walks out of the house, relieved, he tells Skloot to read a passage from the Bible:  ”I give them eternal life, and they shall never die.” While Skloot politely maintains that she won’t be converted, I would have to say that anyone reading has to be. But that’s not the only miraculous moment. Joey, who later changes his name to Zakariyya, is overcome with anger about his childhood and the rest of his life. Yet after seeing his mother’s cells in a microscope and hanging a framed photograph of them in his small apartment, he begins to soften. After Deborah’s death, he seeks out peace and kindness instead of crime. He takes joy in his siblings’ children.

Another element of this book that is so interesting is the inherent distrust that the Lacks’ family had toward Rebecca Skloot at the outset of her project. For decades, the family was treated poorly, not given any information about their mother or what had happened to her cells and her body, and didn’t believe any person—especially a white person—who claimed to have good intentions. Finally, though, Deborah does commit to helping Skloot with the book as a way to tell her mother’s story. Despite moments of apprehension, they form a close bond that shows that they can overcome a past haunted by prejudice and inequality. That, too, feels not so much like a miracle, but an impressive and heartwarming symbol. In that way, this sad tale has a happy ending, or at least a future full of promise.

So Maladjusted Bookclubbers, it’s your turn. What intrigued you about this story?  What issues of race, ethics, spirituality, or family did you connect with? Remember to subscribe to the comments section so we can have an ongoing discussion.

If you’re interested in hearing more, visit the Henrietta Lacks Foundation. Also, read past selections and posts from the Maladjusted Book Club here.

Tagged as: DNA, HeLa, Henrietta Lacks, Rebecca Skloot