ODDENDA & SUCH: #95

HeLa – the book

The book in question here is THE IMMORTAL LIFE OF HENRIETTA LACKS written by Rebecca Skloot and published in 2010 by Crown. It has gotten lots of publicity even down here and even an Oprah Winfrey book recommendation[1], I do believe. Making #1 on the New York Times book listing with her first publication is impressive, but it is the intertwined stories she retells that make it so. The basic story itself is sobering, but the people involved are even more so – for a white writer to have been (mostly and eventually) accepted by the immediate (black) families so deeply has made this book as fine as possible. What started out as determining the story of Ms Lacks and successful cell tissue culturing from her cancer cells turned into a deeper description of being black and poor in the South, the je n’est-ce quoi attitude of the powers-that-be (then and now), and the long term impact of all the stories involved coming together through and into the lives of the generations of survivors. Not to mention the possible and potential down-sides of consanguinity within families, a common cause of genetic “problems” in many of those poorer communities/cultures. While not specifically about black music, my usual bailiwick, this tome looks at the lives of poor blacks in the US in a very understanding, kind, and informed way. In and of itself, it is critical of “American” societies through the 20th Century to the present, but is also a book that cares for those involved – walking a tightrope, indeed.

The basic core “story” is fairly straightforward, and these days a pretty well known one to the world at large on a superficial level (until now). A black girl was born Loretta Pleasant in 1920 in the State of Virginia in Roanoke, and moved to rural Clover, VA after her mother’s death to live with her grandfather, Tommy Lacks, at the age of four. How she became Henrietta is not known, but she probably took on the surname of her grandfather and became Henrietta Lacks before her marriage. This was tobacco-growing territory and the work involved in survival there was near constant to bring in a decent crop: all ages took part in that labor. She grew up in Clover among other children, including an older male cousin, David Lacks (known as “Day”), who was then nine, five years older, and who also lived with that same grandfather. A relationship slowly developed between them over the years from their physical closeness and later emotional attraction to one another, and they eventually married and had children. Around 1950 Hennie developed serious cervical cancer and died the next year in Baltimore (Johns Hopkins Hospital). That would be end of story, except that a clinic doctor took a sample of her cancerous cervix and grew it in tissue culture, very much a famous first in that field at that time. Not only did the cells survive being cultured, they thrived and the whole field of tissue culture took a giant leap forward with their explosive growth. That would then be end of story in the best of all worlds, but that isn’t how it panned out.

In 1951, it was not mandated that doctors get permission to take tissue samples from patients, nor advise them that they had done so. It just happened, regardless, and that was that. It was well after that event took place that the wheels sort of fell off peoples’ lives. Though her family was never told, they were much later contacted for blood samples, and still nobody told them what was going on, or why they wanted to do that. Being poor and black going into the sixties was not a comfortable time for folks and there were stories, both true and false, about medical experimentation on black patients without permission or truth-telling. Some of the family wanted an explanation… felt they deserved one, less their fears grow.

The personnel at Hopkins never answered questions from the family, and a certain degree of understandable paranoia developed surrounding their wife’s/mother’s illness and its treatments. What happened, and why; was there something they should know about their genetic state that they were not being told; were they at risk for “something” unknown? It was, after all, when the existence of the events of the Tuskegee syphilis experimentation became public knowledge. There were valid grounds for suspicion, nay paranoia. For decades, the family was denied information and was taken advantage of by quacks, hoping to get non-existent hospital money from them. Henrietta’s daughter Deborah is the main focus here, the family member for whom the hurt, the empty feeling, the frustration with officialdom was deep She had the persistence to find out the whole story, no matter what it was and where it would lead. She gave a damn. This was truly a brave woman.

As a card-carrying folklorist (and “defrocked” biologist and med student), I can only marvel at this wonderful book. The research behind it was tall, deep, and wide – it is never easy to “fit in” with a culture different from one’s own, and Skloot certainly fits that description. Her persistence as an outsider  white woman in a “foreign” culture over many years has paid off here with sobering truths and wonderful connections. It is a “compleat” story leading to what I feel is the best book I’ve read in years, folkloric or otherwise. It’s not just a “black” book; it’s not just a piece of “science/medical” history; it’s not just a sobering slice of US racial happenings… it’s all of those, and then more. Thank you, Rebecca Skloot… you did full justice to everyone involved with the creation of this book, including the reader.

I purchased my seemingly unread copy at a local thrift shop (Salvation Army/”Salvos”) outside in Sydney’s West for a few bucks because I kept seeing references to it, I was naturally curious, and the price was right. After reading it I feel that this book is well worth its list price. I’m not one to say this often, but I find it a “must read” book for one and all – everyone will “get’ something from it, making it potentially a rather unique and valuable experience.

PETER B. LOWRY                                                                 Sydney                                                                                     August 2017

[1] There has been a recent film for HBO, now, produced by (and starring) Oprah, that has gotten good reviews – stick with the book for maximum effect!

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