Thursday
May312012

Reading "Henrietta Lacks"

The Immortal Life of Henrietta Lacks might be the saddest book I've ever read.   If you don't know this story, here's the bottom line:  A Black woman's cancer cells were taken and cultured without her permission and, because of their superhuman ability to thrive, spawned all variety of discovery and cure.  She died, her disease almost neglected; her family remains dirt poor and deeply uneducated.  In the absence of information from the scientists who benefited from Henrietta's cells, the family creates stories of heroism or victimization, depending on what's going on that day.  What is usually going on is a fight for survival against overwhelming odds.  I thought I would fall over when I read how Henrietta's daughter, Deborah, was plowing forward to go back to school and give an important speech in the midst of calamitous crises like a son going to jail and her own serious illness, only to have the speech cancelled due to 9/11.  The epilogue tells us about some small gains in the younger generation along with defeat after defeat.

This was not one of those books I couldn't put down.  I put it down over and over again.  Getting a snack, reading the paper, fixing my hair, all seemed more attractive than stepping into this immense helplessness.   I cannot fathom the patience and capacity exhibited by this young author, Rebecca Skloot.  She persisted for years before she was able to gain the family's trust.  She respected them even when they seemed delusional (you would be too if you had been through what they've been through).   She wrote with integrity, accurate detail, and she started a foundation.  

I don't know how she did it, but I wish she would share her gift with medical residents in urban hospitals.  I abandoned teaching because I couldn't budge the system of education that made a virtue out of depriving residents of basic human needs.  I couldn't stand to see these young doctors begin their training with considerable altruism, then deteriorate into heartless devotees of conventional medical wisdom, enslaved to their Attendings, blind to the humans they were treating.

Psychologists love to identify parallel process.  This is when the doctor and patient together replicate what the doctor is trying to treat.   Here's an example that made me happy:  A male therapist writing about his frustration teaching a mother how to parent finally realized that he had to parent the mother before she could parent the child.  His irritation and impatience with her was parallel to her irritation and impatience with her child.  Despite how obvious this may seem, hardly anyone pays attention to this principle.  Reams of parenting books educate the parents without even a nod to how they may be feeling--how exhausted, uncared for, frustrated, or unfulfilled.  

And the education of medical residents continues with just a tiny nod to their ravaged inner lives.

What I learned from Rebecca Skloot is that you cannot possibly change anything from the outside.  And if we understand things properly, we are never anything but insiders.  Ms. Skloot shows us how to move in.  By reading her book and letting our hearts explode, we can begin to heal our own split and that of the world.  We can bear witness to this wounded family.  We can bear witness to the pain that doctors experience as they bear witness to the pain that their patients experience.  We can bear witness to the pain that parents experience as they bear witness to the pain that their children experience.  We can bear witness to our selves.  That's what it takes.  Don't look away. 

 

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