Take Another Little Piece of My Heart

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.

Counting to Eight

My Cayman Island adventure started Thursday morning at 6:30 when I left the cab at Kennedy and stopped being my own woman, becoming instead surrogate mother to 8 children for a week.  Eight children.  Me, a woman who barely manages to take care of herself.

Are you sensing the danger yet?

My relization of what a mistake it might be for me to have volunteered to do this escort thing came as soon as we boarded the plane and a certain member of our group let his very loud and unruly true colors show.  Oh yes, I’m sure everyone on that flight was in love with us by the time we touched down at Owen Roberts.

So … Grand Cayman … day three … and we’ve all survived!  I lost two of my kids right away on the first day.  I’m serious.  They thought it would be funny to hide so they could jump out and scare me … only they hid somewhere that I didn’t walk, and then just stayed there while I was busy having 47 heart attacks walking through the rest of the hotel with my other kid (the crowd pleaser from the flight, of course) looking and looking and looking for them.  But they finally came out of hiding and were found and I was so relieved, I forgot to be angry with them.  Good times.

No, but really: good times.  I’m having a great time!  It’s not Jamaica, but it’s hot and tropical and the water has the same wonderful blues …  And not every place has to be Jamaica, right?  But I like it here.  I think I’d like it more if I could see it the way I usually travel rather than being in a big fancy hotel and getting driven to each location by a tour bus, but I’m still liking it enormously.  I went snorkeling twice yesterday, only the 4th and 5th times I’ve ever done that.  I have an abject, claustrophic terror of snorkeling, but I’m also fascinated by getting to see all the stuff you get to see, so I really want to do it.  And yesterday didn’t disappoint.  I need an underwater camera!  I saw so many gorgeous things.  Aside from all the beautiful fish and the fabulousness of the reef itself, the most wonderful was to see seafan coral alive and well.  I’ve only ever seen it dead.  It’s so beautiful.  And maybe you knew it could be purple, but I didn’t.

Most amusing and nervous-making was Stingray City.  I’ll share the photos once I’m home.  Wish I had sound to go with them, so you could hear what our boat captain called the language of Stingray City: non-stop screaming!

The surprise for me is the exhaustion that comes from worrying about the kids, the constant counting and counting and counting them to be sure no one’s lost or left behind, the hyper-vigilance that drains me of all energy.

I have this afternoon off from the children, however, so it’s time to go hang out by the pool with a glass of fruit punch and work on my Camani tan.

When the Hangover Strikes

Last night was another Word for Word workshop in Bryant Park.  Miranda McLeod was back for a session on short stories.  I was looking forward to it because I wanted to give myself that treat — summer evening set aside for my writing and all — and, as I said last week, I really like the way Miranda leads her workshops.

All was good for the first half hour or so … and then it got really loud on the west side of the park.  REALLY loud.  And that would be because, in some unfortunate mis-scheduling snafu, a CONCERT began!  Yes, in the middle of trying to focus on writing, in the middle of trying to think, in the middle of putting myself into the brain-space I need to move to when I want to tell a story … there was a Squeeze concert!

Please understand, I happen to love Squeeze.  Tempted has been a favorite song of mine from the moment I first heard it.  But it’s just a little difficult to combine Cool for Cats with class. 

It was more funny for me than annoying.  And maybe that’s because I was able to get enough into my writing that I didn’t even realize it was Squeeze until they were into their third or fourth song, so focused I missed Black Coffee in Bed!  It wasn’t until When the Hangover Strikes began that I sat up and took notice.  A Squeeze concert!  What on earth is Squeeze doing in Bryant Park on a Thursday night?  Too bizarre, but also fabulous.

In the end … I got to hear some songs I love but haven’t listened to in ages and which — horror of horrors — I had neglected to add to my iPod (happily, that oversight has been resolved).  Better still, I got started on a new story!

Shared History

Today is my brother’s birthday.  As my older brother, he’s been my brother my whole life, but not his.  He had a couple of Stacie-less years in there before I showed up.

Here we are at two years (him) and two months (me).  He’s already begun to look like the brother I know and love.  Me?  Well, I’m still a little shell shocked, clearly. 

This is from one of my favorite series of pics.  I think this might be the only one in which I’m not flashing the camera.  I’m two, Big Brother is four.  I’m just about hitting the peak years of my cuteness, but The Brother is riding a wave of cuteness that will carry him through to … when am I going to see him next?  Saturday?  Yeah, through to today.

When I write about him in my fiction, his name is always Tony, so that’s what I’ll call him here, too.  I’m not sure where that comes from.  It’s nothing like his actual name (of course, it’s not as if “Fox” is anything like Fox’s real name …), but somehow it fits.

I don’t tell a lot of stories about Tony here.  There was the Lee Strasberg story, but I think that was it.  And yet I have so many.  The first time I got to ride a roller coaster and how he came with me and rode again and again and again … not telling me that he didn’t like roller coasters until I’d had my fill.  The excellent tape of us singing A Boy Named Sue and Spinning Wheel at six and eight years old … and sitting at my mom’s kitchen table many years later silly-singing our way through Rocky Racoon.  Teaching me how to climb trees, particularly the big red maple that grew in our front yard in Troy, the one we named “Spook,” the one we used to climb and call out foolishness to people on the street below who couldn’t see us because Spook’s leaf-cover was too thick.  Driving with my bad navigating on the day he, Fox and I had the first Family Adventure trying to make our way upstate to visit our father before he died.   How proud I was to see him perform in “Kid Purple” at NYU.  How he arranged for his fabulously-dramatic, film noir, femme fatale Austrian girlfriend to meet me in the airport in Vienna so I could arrive to a familiar face.  How he kept snapping picture after picture after picture of me when I gave my first reading at Cornelia Street Café, making me laugh and forget how nervous I was (well, you know, that and the double shot of tequila Fox handed me when it looked like I was going to spontaneously combust from terror).  His excellent, celebrity-making performance as The Preacher in our high school production of Tommy (no, I’m not kidding … he was so cool talk-singing his way through Eyesight to the Blind).

You know, to name a few …

He’s my brother and I love him fiercely.  We don’t always agree.  We don’t get to see each other as much as I’d like.  He can still crack me up with silly things from childhood.  He makes me smile when I see how strongly he loves his kids.  He’s my brother and today’s his birthday, so I thought it was time to bring him out of the shadows and onto the blog.

From another favorite series of mine, the famous Land of Make Believe series.  We’re eight and six and Fox is on the scene by this time, though she’s still an infant.  We’re on our way home from summer camp … and this is the first time I’m noticing that whatever’s growing outside that window is coming for us!

_____

And, even though it’s not as funny as hearing Tony and I sing it, I couldn’t resist:

Girl G, Back on the Street

Last night I went to Bryant Park’s Word for Word writing workshop.  Memoir and Creative Non-Fiction were on tap, led by Miranda McLeod, who is wonderful.  She gave us two writing assignments to choose from: take a walk around the park and talk to a stranger, or take out our phones and call a family member and ask them the question we’ve been afraid to ask.  I took the easy way out and went to find a stranger!

Here’s my piece:

“Some people nice, some people drunk.  All kinds of people come here.”

He could be talking about any place, every place, but where we are is a carousel, a pretty little merry-go-round on the south side of Bryant Park on a warm breezy night in July, and Arturo just gave me a ride and posed for my camera.

“What do you do when people are drunk?”

“Well, the customer always right,” he says.  He says this several times while we talk and I wonder if that bit of vendor wisdom was drilled in during Parks Department orientation or learned from his previous life back in the Philippines before he found himself here, in New York, working two nights a week in a restaurant in Queens and the rest of his week here, helping riders — both nice and drunk — onto his carousel for a few spins around and around.

Some people are nice.  Like Arturo himself — a gentle-faced man with close-cropped, slightly greying hair, looking forward to dinner home with his wife.  Dreaming big for his children who are both in college now and living an American story.

And some people are drunk.  Or mean.  Or cranky.  Or just not good at dealing with other people.  Arturo’s shrug is so zen, so accepting and dismissive all at once.  That shrug says that Arturo glides along as smoothly as the shiny horses on his ride.  Life goes on, everything has a place in the cycle.

Some people are nice.  Some are drunk.  Shrug.  Go home.  Enjoy your family.  Start again tomorrow.