Posted tagged ‘HeLa’

On Memory, Memoir, and Rebecca Skloot’s journey with and to Henrietta Lacks

February 9, 2010

It’s harder than I thought it would be to weigh in with a blog-review of Rebecca Skloot’s new book, The Immortal Life of Henrietta Lacks.

It’s not that I don’t like the book – it’s wonderful, and I highly recommend you all go read it.

It’s not that I don’t have some thoughts about the work.  It offers plenty of grist for engagement, from its compelling story to some formal considerations in the writing, to the practical lesson Rebecca is giving us all on what it takes to promote a book in this late-stage of the traditional approaches to publishing.

It’s not that there isn’t a wealth of material to talk about.  Rebecca has written a compelling story, a genuine page turner, populated with characters – people – whom you come to care about deeply, that is at the same time an important inquiry into issues of race, class, personal autonomy and the claims of authority in America.

It’s just that all of this has been said already.  I agree with the assessments of the host of reviewers and bloggers who have already weighed in on the book:  it’s a great achievement, it’s a compelling read, and it is at once emotionally moving and intellectually demanding, which is my idea of a fine, fine book.

So what to add?

Well, I’ve got one thing to say more from my perspective as a writer who also teaches writing than as a straight reviewer/critic.  At least one of Rebecca’s choices of technique in this book was hard won, complicated, and very  important to the ultimate power of the work.

That is:  a number of people have noted what they see as the use of some of the story telling tools from fiction in the tale – and that’s certainly fair.  Her telling of scenes from the story of Henrietta Lacks herself with a novel’s third person, seemingly omniscient narrator is a case in point.

But to me the dominant source-genre for the book is not fiction but that very tricky approach to non-fiction that falls under the umbrella of memoir.

I heard Rebecca tell Terri Gross on NPR’s Fresh Air that she resisted inserting herself into the story until it became inevitable, until her odyssey with the Lacks family became so intimately intertwined with what she thought her formal narrative to be that she had to emerge as a character in her own book.

That decision shapes the entire work, much for the better I think.  We enter the tale with her 16 year old self, a not-entirely successful high school student, catching a stray remark in a biology class about an important line of cells, and their source, Henrietta Lacks, of whom the instructor said, as an aside, “she was a black woman.”

With that we’re off, and we are able to understand the entire work that follows as a journey undertaken by a maturing Rebecca to come to grips with that sudden, strange, and almost comically opaque revelation.

That journey is not undertaken by an omniscient narrator, for all that the device shows up here and there; we don’t have a Virgil on this sometimes infernal journey.

Rather, we have Rebecca herself, a changing person and voice, someone with accumulating, always incomplete knowledge.  Most important for the power of the book, Rebecca is implicated in the tale:  each discovery she makes has both an explanatory signficance and an emotional one, for her. And hence for us, once we’ve invested our concern in the teller of the tale.

By the way, in this I don’t mean that Rebecca comes to dominate the story.  Henrietta herself, and even more, Henrietta’s daughter, Deborah, are the emotional centers of the story. But that’s how memoirs work.  They are not simply, or even mostly (in the best ones) about the author; rather, they provide a bridge through the author to sympathy with the people and experiences encountered on a life’s journey.  A keen memoirist uses what she or he knows to be a subjective view to create a connection between the reader and both what and the way she or he sees the world.

That’s what makes the most controversial scene in Rebecca’s book so valuable, narratively.  At one point, in the midst of Henrietta’s family, Rebecca experiences a kind of exorcism.  She’s a rationalist, a science writer, for heaven’s sake.  And yet this experience is real, felt and…as written, present for the reader.

All of which is to say, that memoir isn’t just a “what I did today” account of a life:  it is a conscious and complicated narrative stance, which, when wielded by a writer of skill and sensitivity constructs a world fo feeling out of an account of fact – or what seemed like fact as lived.  Doing it well is really hard – and having done so is one reason that Rebecca produced a book that works so well.

Image: Ary Scheffer, “Dante and Virgil encounter the ghosts of Paulo and Francesca” 1854.

Sexual terror kills people: a sort-of follow up to David Brooks’ sexual queasiness.

November 19, 2009

A few days ago I wrote this screed of disdain about David Brooks data-less, thoughtless complaint about the vapid sex lives of Kids These Days™.*  I have more than once commented on the evil consequences of marrying sexual queasiness to bad science, social or otherwise — and it struck me that  it is important to remember that Brooks’s queasiness about sex has a broader context and worse consequences.

The thought came to me as I was reading my pre-pub copy (what used to be called a galley) of Rebecca Skloot’s marvelous new book The Immortal Life of HEnrietta LAcks.  Rebecca has written a work that  is proximately the story of HeLa —  the most ubiquitous (some would say ferocious) human cell line used in modern biology — and the woman from whom those cells were derived, without her knowledge or permission.  It’s more than that, of course — an inquiry into race and its twisted history in America, family, medical practice and medical ethics, the autonomy — or lack therof — with which we all inhabit our own bodies, and much more besides.  I’ll blog about it properly closer to pub date, but put this one on your list.

Within all that, the factoid that got me thinking was Rebecca’s discussion of the particular type of cancer that killed Henrietta Lacks so swiftly and cruelly: cervical cancer, the sequel to her multiple infections with HPV-18, one of the most malign of the 100+ strains of Human Papilloma Virus.

HPV infection was and is an epidemic.  In 2008, the Centers for Disease Control reported that

HPV is the most common sexually transmitted infection in the U.S., with about 20 million people currently infected. Women have an 80 percent chance of getting HPV by the time they are 50. HPV is most common in young people who are in their late teens and early 20s.

That is:  about 7 percent, give or take, of the American population — closer to ten percent of the adult population**–are infected with a virus whose consequences range from nothing to death in predictable proportions.  The same CDC report tells us that each year 11,000 women are diagnosed with cervical cancer, and that 3,600 will die of it.

For those of you keeping score, the number of women who will die this year of the disease that killed Henrietta Lacks is about 80% of the total US military deaths in Iraq since 2003 — 4363, according to the latest AP count.  It is greater than the number of combat deaths in that period:  3,476.

There is this difference of course:  death is a necessary component of battle.  War is the imposition of national will by violence, in one short hand definition, and within that context, people will die.

By contrast, no one — or rather, within a generation, very close to no one — need die of HPV infection.  The HPV vaccine, approved by the FDA in 2006, protects against four of the strains of HPV, including those that cause genital warts and cancer.  It is effective, according to the CDC, and safe:

As of June 30, 2008 VAERS has received a total of 9,749 reports of potential adverse events following HPV vaccination. Ninety-four percent (94%) of these reports were about non-serious adverse events.

Six percent (6%) of adverse events reported for the HPV vaccine were considered serious, which is about half of the average number of serious reports for other vaccines. In comparison, the overall average in VAERS for any serious adverse event following vaccination ranges from 10% to 15%; therefore, the percentage of serious reports for Gardasil® is less than the overall average for other vaccines.

The CDC goes on to caution that the number of adverse events actually caused by the virus vaccine is almost certainly lower than that number, due to the post hoc ergo propter hoc problem.

The virus vaccine is recommended for girls aged 11-12.  Why?  Because this is before the age of likely infection, given that HPV is a sexually transmitted pathogen.

We all know where this goes.  The notion of protecting girls from a deadly disease transmitted in the context — oh get the fainting couch ready — of the sexual lives of their older selves is terrifying, at least to some.

So much so that  those terrified of especially female sexual appetite and expression (see for an allegedly respectable example, Chunky Reese Averse Ross Douthat) would rather kill people than acquiesce in the possibility that human beings might on occasion make the beast with two backs.

Recall:  Texas secessionist Governor Rick Perry wasn’t always 100% crazy.  Back when the loon quotient was down to no more than 95% or so, he actually, in a moment of clarity in 2007, signed an order that all require all sixth grade girls in Texas to receive the HPV vaccine.  The response?  As you’d expect.  Texas legislators “rushed to file bills that would override the governor’s order, which they said revokes parental rights and could encourage young girls to be promiscuous.”

To his credit Perry stood up for modern public health:

Providing the HPV vaccine doesn’t promote sexual promiscuity any more than the Hepatitis B vaccine promotes drug use,” Perry said Monday. “If the medical community developed a vaccine for lung cancer, would the same critics oppose it, claiming it would encourage smoking?”

Soon, though — damn soon — in fact, he lost.  Though he complained — accurately, that the legislators who had voted in favor of the bill overturning his executive order would rather tell women that  “We could have prevented this disease for your daughters and your granddaughters, but we just didn’t have the gumption to address all the misguided and misleading political rhetoric,” he lacked the votes to prevent his veto from being overturned, and allowed the bill, unsigned, to become law.

Perry, it should be noted, still defends this decision.  I have no time for just about everything Perry stands for  — but on this one, he has it right.

So let’s recap:  we face a disease that kills more women in this country each year than have died in battle in the last six in our war in Iraq….

…that will be allowed to persist in the lives of our daughters because to some people it is more important to pretend that human beings don’t have sex with more than one person in their lives than it is to prevent wholly avoidable suffering.

So, finally, to return to why I find David Brooks’s maundering about the sex lives of New Yorkers so pernicious is not just because of the gaping crater of intellectual shoddiness at its heart:  it that he offers a well-spoken version of the attitude that declares, whatever may actually happen in real human experience, women shouldn’t have the temerity to uncross their legs.  Remember the corollary of that belief as well:  if they do, then, by gum, disease, distress and death are merely the appropriate consequences for such sin.

Last note:  when ever I hear the term “value voters” I throw up in my mouth.  The single central value of just about any ethical system, including those advanced by the sages of traditional religion, is that it is wrong to use other people as objects, rather than subjects, individuals of intrinsic value.  Requiring others to die to avoid unpleasant contradiction with one’s own value system is not a virtue.  It is, in the only true sense of the word, the very definition of a sin.

A pox upon them.

I mean that literally.

Oh — and one more thing.  If anyone wants to draw the obvious connection to the current health care debates (Joe Stupak, are you listening?  Senators?) then I think that is an entirely appropriate link.  The entire anti-health care movement is in the end a decision to allow innocents to die in large numbers in order to achieve other ends; it sacrifices individuals in the service of either or both abstract “values” and the financial interests of various elites.  Mere sin hardly covers the case; evil is more like it.

*I later found out that Brooks’ silliness was deeper than I thought, for I chanced across the original article in New York magazine in which the editors described the process by which they accumulated the sex diaries that so confounded the gentle Mr. Brooks.  These were, which I’m sure will surprise no one, wholly selected for maximum effect.  Producing social commentary on the basis of sought-and-found soft porn purveyed to prop up an at-risk publishing model is something only the credulous or the contemptuous-of-their-readers would attempt.  Consider this an exercise for the readers to decide which it might be.

**and yes, I know that plenty of under-18s will have HPV infections.  This is numerical shorthand here — an attempt to express scale.  It is not, as I hope the language makes obvious, a precise claim.

Update: minor but crucial edits above (for “virus” read “vaccine” twice) thanks to the eagle eye of  Lovable Liberal.

Images:  Albrecht Dürer, “The Revelation of St John: 4. The Four Riders of the Apocalypse” 1497-1498

Berthe Morisot, “The Balcony” 1872