I just finished reading Rebecca Skloot’s The Immortal Life of Henrietta Lacks. I had to keep stopping along the way because of the tightness in my chest. I read, cried, read, smiled, read, got angry, read, cried, read, marveled, read, got angry, read, cried … Skloot’s writing is more story than study. It’s compelling, vivid reading, and I would recommend this book to any and everyone. This is a story we should all know.
The pain in my chest has many causes, not the least of which is my reaction to the cavalier, unfeeling treatment Henrietta seems to have received from doctors, my reaction to thinking about all the ways in which this story isn’t yet over, all the ways that new stories could be started every day, every time one of us has a biopsy or blood test. In her Afterward, Skloot says, “How you should feel about [the fact that you have no right to your tissues after they are cut from your body] isn’t obvious.” Yeah, not by half. There are too many issues here: informed consent, racism, sexism, ethics, rights, scientific progress, “the greater good” …
Naturally, reading this book makes me think about my own tissues, about the possibility (probability?) that they are out there somewhere in a freezer — the tumor that was cut from my womb in 1994, and the crop of new tumors that were removed in 2003. Why anyone would have an interest in holding onto any of that material is beyond me, but what do I know? What I do know is that I can’t remember now if there was any fine-print line in the surgical consent forms I signed that said those fibroids could be used for education or research.
In 1994, I was more concerned with what would be left inside me to spend much energy on the piece I wanted cut out. I was fighting an entire surgical team in an effort to keep my uterus and ovaries, so the fate of my fibroid was of no real interest.
Mildred was interested. She asked if we could have the tumor, if they’d pack it up in a jar of formaldehyde for me to take when I left the hospital. My surgeon didn’t even hesitate before refusing, and I remember being curious about that. It was my tumor, after all. Why couldn’t I have it if I wanted it? Who cared? But Dr. M just said no, they didn’t give out tumors like party favors.
(And no, I didn’t think twice about my aunt asking for the fibroid. She was a biologist. I’d grown up familiar with the many odd things she had in jars of formaldehyde. Why not my fibroid?)
I don’t have the energy or inclination to do the legwork to find out what happened to any of my fibroids … or, at least, that’s what I would have said before I read Henrietta’s story. Now I’m not so sure. I certainly never would have thought about wanting to find out before reading Skloot’s book.
I can’t stop thinking about Deborah Lacks — about all of Henrietta’s family members, but especially Deborah. The real, human way the family saw those cells, saw Henrietta’s immortality is so striking, so painful, so unfathomable. At first, casual glance, the way they talk, the things they say, think, feel about the HeLa cells can seem to be evidence of their limited education. But the closer Skloot is able to get to them, the more we get to hear them talk, the more Henrietta’s family seem more mystic than misguided. The elaborate ways Deborah processed what happened to her mother and the reality of those living cells are shocking and heartbreaking and beautiful and extraordinarily sophisticated.
I had such a hard time reading this book, and I’m having a hard time trying to articulate my reactions to it. Even trying to write this, I’ve had to stop several times to keep myself from crying. I don’t know if other readers will respond as dramatically (though, knowing how strongly I identify with painful history, it’s likely that others read this book and have far less traumatized responses), but I don’t know how anyone could read this and feel nothing: for Henrietta and her family, for the callous disregard with which the medical and scientific communities are often able to treat the very real people who make their livelihoods possible.
Maybe you think Henrietta’s story has nothing to do with you. Read this book. Maybe you think bioethics and science writing are stuffy and boring and not exactly beach reading. Read this book. Maybe you’ve got a surgical procedure coming up and think you’ve considered all the ramifications. Read this book. Maybe you’re just looking for a really incredible book to read before school starts. Read this book. It’s exceptionally well-written, and — as I said at the start — we should all know this story.