Rebecca Skloot and Writers Weekend

This past week and weekend was a busy one for book lovers in Augusta. Last Thursday night kicked off the 6^th Annual Writers Weekend, which is sponsored by the Department of English and Foreign Languages at Augusta University, and “features award-winning authors and teachers who will lead workshops and share their original creative nonfiction, fiction, and poetry. This unique opportunity enables readers and writers from a variety of backgrounds to connect, collaborate, and create.” (Source: Literaryaugusta.com). Not only was Thursday night the kickoff event for Writers Weekend but it was also the culmination of various events held throughout Augusta to build excitement for the keynote speaker Rebecca Skloot, author of The Immortal Life of Henrietta Lacks. A movie screening of the HBO movie based on the book was shown at Augusta University and the Columbia County Library back in January and Rebecca Skloot and two members of the Lacks family came to town this past week to participate in panels, meet-and-greets, and Q & A sessions at the Columbia County Library, Paine College, and the Imperial Theater.

 Rebecca Skloot is the author of The Immortal Life of Henrietta Lacks which was published in 2010 and it took her 10 years to write this book- mostly because she took the time to respect and get to know the various members of the Lacks family. The book is about an African American woman who died in the 1950s from cervical cancer, but her cancer cells (called HeLa cells) lived on and multiplied which had never happened in a lab before. Researchers around the world soon used her cells to study and cure various diseases (polio, for example) and create vaccines. Her cells journeyed to outer space where astronauts could study the effect of space travel on human cells.

 I remember the buzz when the book was released and put it on my To-Be-Read list but for some reason I never got around to reading the book. Well now that Rebecca Skloot was coming to town it was the perfect opportunity. I attended one of the movie screenings and “A Conversation with Rebecca Skloot and Henrietta Lacks’s Family” at the Imperial Theater. Victoria Baptiste (Henrietta’s great-granddaughter) and Shirley Lacks (Henrietta’s daughter-in-law) participated in a panel with Rebecca Skloot that was moderated by local attorney Laverne Lewis Gaskins.

One of the first questions that Ms. Gaskins asked of Victoria Baptiste and Shirley Lacks was to describe Henrietta to the audience. They described Henrietta as a wonderful, giving person who loved people and loved to feed them too! Henrietta also loved to dance, to look good all the time, and she loved to wear red toenail polish. Despite the poverty of the Lacks family she made do with what little she had. Then Ms. Gaskins asked the ladies about Deborah Lacks. Deborah was Henrietta’s daughter and the essential link that Rebecca Skloot needed to find out more about Henrietta and the HeLa cells. Ms. Baptiste and Ms. Lacks described Deborah as witty, loving, a jokester, and spiritual, yet, always yearning to know more about her mom.

Rebecca Skloot first heard about HeLa cells in her school biology class in 1988. The teacher told the class that the HeLa cells were named for Henrietta Lacks and that these cells had never stopped growing and were responsible for much of the medical breakthroughs in the twentieth century. This intrigued Ms. Skloot and after class she asked the biology teacher for more information, but the teacher said there was no more information known about the woman. When she was in college, Ms. Skloot took a General Ed class and one of her assignments was to write about something the world forgot, so she wrote about HeLa cells. While conducting research for this writing assignment Ms. Skloot found out that the HeLa cells were originally attributed to a fake name to give the Lacks family privacy. While Ms. Skloot was in grad school she continued her research on the HeLa cells which led her to make her first phone call to Deborah Lacks in 1999. Deborah was excited yet distrustful of this white lady that wanted to write about her mother, so she kept Ms. Skloot at arm’s length (Deborah and her family had been burned before by other people claiming to write about Henrietta and the HeLa cells). Ms. Skloot originally thought her research and book would just be about Henrietta but the more she found out about how the family was treated (or not treated) by the medical community, the more she realized that her book would be about the whole Lacks family. To gain Deborah’s trust, Ms. Skloot interviewed extended members of the Lacks clan and would tell the stories and tidbits of information about Henrietta through messages left on Deborah’s answering machine. Ms. Skloot told the audience that she had no journalism background when conducting this research, so she had no preconceived ideas or training about conducting interviews or journalistic research methods. Ms. Skloot said that journalists usually only ask questions and don’t allow their sources to ask questions of them; Ms. Skloot did the opposite and the Lacks family slowly learned to trust her.

So right now you’re probably wondering what the big deal is about these HeLa cells and why was the Lacks family so distrustful of journalists? Henrietta’s biopsy was conducted before informed consent was standard in medical procedures. The doctors at John Hopkins used Henrietta’s cells in research without her knowledge or permission and the surviving family members were never notified or asked for consent either. The Lacks family also was never financially compensated even though their matriarch’s cells saved and improved millions of lives around the globe. John Hopkins researchers contacted the Lacks family in the 1970s and conducted more tests and took more tissue samples without being fully honest about what they were researching and how the test and tissues samples and results were going to be used. (At the panel Ms. Skloot told the audience that informed consent laws were established by the 1970s but not codified at the time that John Hopkins researchers were collecting samples from the Lacks family).

During the panel Ms. Baptiste and Ms. Lacks stressed the importance and ethics of informed consent about cell and tissue research in the medical community: “If you have to ask me permission to use, then you know it belongs to me” (Ms. Baptiste) and “If I’m alive, then you need permission because it’s part of me and belongs to me” (Ms. Lacks).

Racial disparities and attitudes in healthcare were also discussed at the panel. In the 1950s racial segregation in Baltimore determined where Henrietta could seek out and receive medical care. John Hopkins was the only hospital in the area that accepted poor, African American patients. Ms. Baptiste and Ms. Lacks also suspect that race played a part in Henrietta’s pain management while she in John Hopkins recovering from surgery and radiation treatments. Ms. Baptiste currently works in the medical field and sees discrimination against patients of color almost daily. She told the audience, “You can’t change the mentality of people despite protocols and regulations.” (When I was in the book signing line, a lady in front of me told Ms. Baptiste that her Haitian husband is treated differently than she is whenever he goes to a medical appointment and this woman suspects this differential treatment is because of the color of his skin and his accent).Ms. Skloot admitted to the audience that she grew up in the racially-sheltered Pacific Northwest; she thought racism was gone in this country and she didn’t experience the realities of race until working with the Lacks family. She was told, “You’re going to get access to things a black writer wouldn’t.” She still didn’t believe this until she questioned an older white doctor who had conducted testing on the Lacks family and referred to them as “those people.”

John Hopkins has not formally apologized to the Lacks family- according to the hospital lawyers it would be an admission of guilt. John Hopkins does honor Henrietta Lacks every year and Shirley Lacks’ husband told her that it “warms my heart to see these people learn about and acknowledge my mom.” In 2013, there was more controversy when German scientists sequenced the genome of HeLa cells and released the genetic information online. Some of the Lacks family was concerned that their genetic information would be viewable by the public while other family members were curious and hopeful that sequencing the HeLa genome could benefit the world.

Ms. Skloot told me she loved my tabs; I then told her, "Well, you're going to love where my cat chewed the corner of your book because he was mad that I wasn't feeding him."

On a semi-lighter note…

Actress Karyn Parsons headlined the opening session of the Writers Weekend event on Saturday. (Karyn Parsons played Hilary Banks on The Fresh Prince of Bel Air TV show). Ms. Parsons was invited to Writers Weekend to promote her non-profit company Sweet Blackberry. The idea for Sweet Blackberry began when Ms. Parsons was pregnant with her first child and realized that she would need to supplement her daughter’s education regarding African American contributions to the world. The same stories are taught over and over, and schools don’t have the resources to update or supplement their materials. Ms. Parsons admitted to the audience that she hated history as a kid; it was presented as a series of dates in a very abstract way and not as a series of stories that were relatable to her. Sweet Blackberry aims to change that by presenting children with stories of historical figures on their level. Right now, these stories are presented as short films that can be purchased through the Sweet Blackberry website or viewed on Netflix. Film narrations have been provided by Alfre Woodard, Queen Latifah, and Chris Rock (with Laurence Fishburne narrating on an upcoming film on Bessie Coleman!). Future goals for the organization include book publishing, TV series, apps, an interactive kids’ section on the website, and the website itself as a resource for African American historical figures.

The second session I attended at Writers Weekend was “A Reading with Tony Grooms” who read “Uncle Beasley’s Courtship” from his short story collection Trouble No More (also available through the Kennesaw Digital Commons) and three passages from his new novel The Vain Conversation. Mr. Grooms’ novel was in the works for 25 years (!!) and was inspired by a 1991 AJC article about the 1946 Moore’s Ford, double lynching in Walton County (you can read a recent update here: http://www.myajc.com/news/state--regional/moore-ford-lynching-years-long-probe-yields-suspects-but-justice/J5QYgAcuQoTIRta5AVeS5L/). Mr. Grooms told the audience that his novel is a story that asks questions about redemption and is an analogy about race relations in the US (“there has been no closure”).

Title: Being Mortal
Author: Atul Gawande
Genre: non-fiction, medical history, end-of-life issues

I read this book after my boss called it "the best book I've ever read." How can a book blogger pass on a recommendation like that?

In the recent past extended families took care of each other, yet in this same era people tended to die quickly and unexpectedly and had shorter lifespans. Nowadays people can languish in pain for years from the effects of multiple chronic diseases, medications, and medical interventions. When medical knowledge increased, our lifespans increased, as well, but not necessarily our quality of life in later years or when suffering with a terminal illness. While family members could take care of each other in the past, the increased lifespan and effects of multiple diseases means that family members do not have the time, skill, or appropriate knowledge to take care of their loved ones. Dr. Gawande investigated the history of nursing homes and assisted living institutions for this book. The priority of nursing homes is safety of the residents and efficiency for the staff. Personalized quality of care of the residents is never discussed which is why so many of the elderly waste away. Dr. Gawande also toured and interviewed hospice care which provides comfort on the terms of the ill instead of high-tech medical procedures. Hospice allows the terminally patient to prioritize what matters most to them in the end and helps the patient reach those priorities.

This was definitely the best non-fiction book I have read this year. Dr. Gawande writes in a personable and non-intimidating style about a subject that most of us are uncomfortable discussing. Dr. Gawande was also uncomfortable discussing end of life issues with his own parents and all three of them are doctors! Keep the tissues handy- you will need them!

Title: Scurvy: How a Surgeon, a Mariner, and a Gentleman Solved the Greatest Medical Mystery of the Age of Sail

Author: Stephen R. Bown

Genres: non-fiction, history, medical history, naval history, read for school, pirates

This blog post has a different format and style of writing than my regular posts- this an academic book review my class was assigned for the Golden Age of Piracy course that I'm taking this summer. It's long, but bear with me, I think you'll enjoy it!

In Scurvy: How a Surgeon, a Mariner, and Gentleman Solved the Greatest Medical Mystery of the Age of Sail (New York: Thomas Dunne Books, 2003), Stephen R. Bown follows the convoluted history of the cure for scurvy during the Age of Sail (1700-1850) in Britain. Scurvy was eradicated after decades of conflicting research and bureaucratic red tape, courtesy of the British Admiralty. Ridding the British Navy of scurvy helped strengthen Britain’s economy as it entered the Industrial Revolution (198):

“The defeat of scurvy, and the concomitant increase in the time ships could spend at sea, was … the keystone in construction of the British-dominated global trade and communication network that flourished throughout the nineteenth century” (208).

         Chapters are organized chronologically with the first two chapters giving the readers background information on the seafaring world and scurvy. Detailed descriptions of the horrible and unsanitary conditions that sailors suffered through while engaging in a dangerous occupation is blended with the history of scurvy and the symptoms and effects, physically and economically of this disease. The third chapter explains George Anson’s voyage to the South Seas, the greatest medical maritime disaster of all time, and how this disaster “was the beginning of a golden age of scurvy research… and raised public awareness of the social cost of scurvy” (68). Chapters 5, 7, and 8 focus on key historical figures that were monumental in the fight against scurvy:  James Lind (the surgeon mentioned in the book’s subtitle), James Cook (the mariner) and Gilbert Blane (the gentleman). Each of these three gentleman used their experiences and social standing to further the cause and journey of scurvy research and a cure, with varying results. Other chapters explain debate in scientific and naval circles over citrus rob versus wort of malt as cures for scurvy.

            Bown introduces and sets the book’s tone with a horrific, detailed description of the physical symptoms of scurvy suffered by thousands of sailors for centuries. Not only did scurvy affect the sailors and crew of the British Navy, but this preventable disease had disastrous social consequences for British citizens and the economy. This insidious disease killed over two million sailors, “more than storms, shipwreck, combat and all other diseases combined” (3).

Throughout the book, Bown intertwines narrative with scientific data to create an intriguing look at one of history’s most mysterious yet, preventable, illnesses. Primary sources such as, memoirs, journals, and casualty lists, were cited to describe personal accounts of ship life and the effects of scurvy from a sailor or surgeon’s point of view. Bown also used secondary sources to supplement his narrative: recorded folk cures for scurvy, histories on food and food preservation, biographies, and research on ascorbic acid (Vitamin C).

Ship logs that recorded the victuals ordered and stored on the Navy ships enlighten the reader about the bland and nutrition-deficient diet that sailors were forced to partake as part of their daily routine. Unfortunately, the bland and tasteless food rations, the damp quarters and unsanitary conditions, the four hours of sleep every night, plus the stress from the extreme physical labor all sailors experienced wore down the sailors’ immune systems and made them ripe victims for scurvy and numerous other diseases.

Although this was enjoyable read and Bown thoroughly researched his subject matter, there are a few weaknesses to the book. The first one is the 24-page chapter on Napoleon and Horatio Nelson which, at first read, appears out of place. It takes Brown thirteen pages of war strategy to explain how these two men and the Battle to Trafalgar were intertwined with scurvy:

“But with the defeat of scurvy, the warships of the Royal Navy never deserted their posts and the majority of Napoleon’s navy was kept bottled up in half a dozen separate ports throughout the war. The blockade disrupted France’s commerce and communication with her colonies, damaged the French economy, and weakened the country’s capacity to pay for the ongoing war” (198).

In other words, the expensive and preventive scurvy measures and rations were visibly paying off! Scurvy research had allowed the British Navy to build up their fleets due to the lack of deaths from scurvy. The increased manpower helped the British defeat the French whose forces were weakened from scurvy and other diseases and lack of support from Bonaparte. If these preventative measures had been in place decades earlier, the outcome of the American War for Independence might also have been in Britain’s favor! In the last two pages of Chapter 9, Brown points out the silent role the scurvy cure played in thrusting Britain onto to the world stage as a global empire:

“With a lower death toll of mariners on long voyages, the expense of manning ships and shipping goods was greatly reduced. Without scurvy tethering ships to port, global trade expanded throughout the nineteenth century, fuelling the Industrial Revolution” (208).

The second weakness I found was the glossing over of the Vitamin C research in the twentieth century, although this may be due to the fact that the book’s focus was on the Age of Sail. It still would have been nice to read how the scientific advancements of the microscope and germ theory aided scurvy research.

The cure for scurvy was also a social and humanitarian revolution. Instead of treating sailors as cheap and expendable, the preventive measures used in the 1800s changed the way the Admiralty viewed and treated the thousands of sailors in its care. The cure for scurvy had a ripple effect outside of Britain and increased trade and prosperity throughout the world.

Because of the non-academic nature of this book, I feel that multiple reading levels, reading styles, and research areas would benefit from reading this book. This book would appeal to readers and researchers of the Age of Sail, British naval history and medical history. As a college student and library employee, I would feel confident in recommending this for various reading needs and research purposes: AP History course, college history course, medical historians, naval historians, and amateur history buffs.