Brain on Fire

by Susannah Cahalan, Free Press, November 2013

Brain on Fire is Susannah Cahalan’s reconstruction of her harrowing year with a brain inflammation.  Calahan was a 24 year old reporter with the New York Post in 2008 when she began to exhibit signs of mental illness.  She was living on her own in NYC and had recently begun a serious relationship with Stephen.  Cahalan’s symptoms were a mixture of the physical (weakness on her left side, difficulty speaking) and the mental (paranoia, violence and psychosis).  Her condition was undiagnosed for an agonizing period of time.  Some of her physicians thought she was suffering from alcohol withdrawal despite the fact that she told them she was only an occasional drinker.  She came very close to being diagnosed as a schizophrenic.  Both of her parents but especially her father insisted that her illness had a physical cause and only with this advocacy was she admitted to NYU.  There she was diagnosed as having an autoimmune inflammation in the one hemisphere of her brain.  In a marvelous nod to medicine as an art not a science she is finally diagnosed by a physician who administers a simple straight forward test – she is asked to fill in numbers on a drawing of a clock.  Because she writes all of the numbers on one side of the drawing the physicians now have proof that the half of her brain is inflamed.   So after over one million dollars worth of laboratory tests, she is diagnosed by a savvy MD with pencil and paper!  Once the diagnosis of autoimmune disease is confirmed by researchers at Penn, Cahalan has a slow but steady recovery.  There are two back stories going on that deserve a mention.  One, her new boyfriend Stephen sticks around even when her strange behavior appears to have a mental origin not a physical one.  Surely a guy worth knowing!  Secondly, Cahalan renews her strained relationship with her father as he is tirelessly at her bedside throughout her illness.  As they say – it is an ill wind that blows no good. 

The strength in this story is Cahalan’s meticulous research.  In reviewing her medical records, reading a journal her parents kept through the illness, interviewing friends and family for their perspectives, and piecing together the little that she remembers she has told a story that reads like a suspense novel.    She is very good at synthesizing complicated medical issues into readable prose.  For me this was a quick read not the medical tour de force that was Henrietta Lacks but good nonetheless.  The one lesson I take from all of these nonfiction stories that deal with our health care system is don’t enter it on your own.  You must get an advocate (and not a timid one) who will fight for you and insist that you get top notch attention.  It is easy to be shunted off to the easiest diagnosis.  Cahalan makes the point that there are more than a few people with her syndrome who have been misdiagnosed and either did not recover or sit in psychiatric institutions today.  Scary for sure! 

I read a copy of this book provided by the publisher.

Destiny of the Republic

Destiny of the Republic: A Tale of Madness, Medicne and Murder of a President by Candice Millard, Random House Audio, September 2011, narrated by Paul Read, 9 hours, 47 minutes.

It is the best kind of history to read -engrossing and all encompassing without been dry or stilted in anyway

In this gripping account of the murder of James Garfield, 20th President of the US, Candice Millard uses the assassination as a means to examine the culture and politics of America in the 1880s. My guess is if you remember anything at all about Garfield from US history it is that he was assassinated by a “disappointed office seeker”. Millard clears that one up early; he was killed by a man who was seriously mentally ill, certainly way more than disappointed.
We are treated to an examination of the US society fifteen years after the end of the Civil War. In 1880 the politicians are divided between those who support the spoils system (winners get to name their friends and supporters to federal offices) and those who are looking to reform the system into a meritocracy. Garfield is among the latter. Garfield was a poor son of an Ohio farmer who had worked to get himself a classical education. After service in the Union Army where he rose in the ranks to become a general officer he has won the US presidency through an unlikely series of events. After reading this story I am convinced that Garfield could have been a great president if he’d lived. He was certainly a top notch guy – well rounded, courageous, ethical, funny, empathic and intelligent

Garfield’s assassin, Charles Guiteau, receives almost as much background as Garfield himself. The author recounts Guiteau’s descent into mental illness. His unsuccessful marriage, his inability to hold a job, his chronic indebtedness and his delusions are all laid out. The parts of this story about Guiteau are downright scary and read like a thriller as he slowly moves toward the assassination.

Millard has a great gift in her ability to describe what it was like in the 1880s. One of the things that got my attention was that the president of the US, everyday had office hours where anybody (!) could make an appointment and meet with him. You just came to the White House, sat in the anteroom and waited to be seen. No security, little or no screening – amazing and this was only 130 years ago! In fact Garfield had spoken to Guiteau at least twice prior to the assassination. Garfield was shot at the train station in DC where he had gone accompanied only by his friend the Secretary of State, to board a train to vacation with his family at the Jersey shore.

The medical drama ensues after Garfield is shot. Antiseptic techniques have not been accepted by the majority of US physicians. Joseph Lister attended the Centennial celebration in Philadelphia and described his success with asepsis; he was ridiculed by the most eminent surgeons in the US. Garfield’s wounds were survivable; the bullet he took did not hit any major organs. He was most probably infected by the medical staff who continually probed his wound with unsterilized hands and instruments. He lived for 10 weeks as he slowly and painfully succumbed to overwhelming infection. The battles that took place between the arrogant physician in charge of his care (William Bliss) and younger colleagues who understood wound infection are all documented. This tragedy plays out almost in slow motion and really is heart breaking.

My review really doesn’t do justice to how good this book is. In an effort not to make the review too long I’ve left out lots of things that add to the richness of this story. It is the best kind of history to read -engrossing and all encompassing without been dry or stilted in anyway. If you read history or even if you don’t, don’t miss this one!
I listened to the audio edition and Paul Read was a good narrator, although some of the female dialogue he read was breathy and a little strange.

I listened to a copy of this story I bought from audible.com

The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks

by Rebecca Skloot

Read by Cassandra Campbell and Bahni Turpin
Random House Audio
February 2010

This was an audio book that I listened to over a 2 week period. I usually have an audio book from the library in my car as I spend a significant amount of time driving alone especially in the summer. Most of the audio books I listen to are eminently forgettable but not this one! It was recommended by Jen at Devorer of Books (a great blog) as part of the Audio Book Week in June.

This book melds the two very different stories of the family of Henrietta Lacks, a poor African American woman, who died tragically at Johns Hopkins Hospital of an aggressive cervical cancer in 1951 and the story of her cancer cells (called HeLa cells) that were harvested from her tumor and used by medical researchers throughout the world for the next 50 years without the knowledge or permission of her family.

The author has done an extensive research job in putting together this book. The afterword notes that it took 10 years to complete the book. She did a great job. The science is easily understood by the average reader, the family story is enhanced by the author’s patient relationship with the family of Henrietta. The science side of the story is a history of medical/laboratory research in the 20th century told with the HeLa cells as the central player. The life of Henrietta and her family is a history of rural African Americans who migrate to the big city – Baltimore and all the problems that were part of that story. The author intertwines these stories in a masterful way.

Let me start with the science and medicine. I loved this part of the story. As a med tech that started working in the 1960s my career began at the end of this era. In the 1960s, the MDs were still gods almost never questioned by anyone, patient informed consent was totally unknown, reagent companies were in their infancy, lab techniques were far from standardized, medical conferences were often peppered with public fights between different research camps, mailing blood samples around the world in card board boxes was standard practice and there were remnants of racism in medical care. The reader is treated to detailed reviews of these topics and lots of others always tying the topic back to the HeLa cell cultures. I was further entertained in the story when it turned out I actually knew some of the medical folks from Fox Chase Cancer Institute and Johns Hopkins who played a part in this story (I actually almost drive off the road as I listened to the Hopkins section!). Learning of some of the dubious ethical studies that occurred in the 1950s, ‘60s and ‘70s gave me knew respect for the development of informed consent policies and the role of Institutional Review Boards in protecting patient rights.

The story of Henrietta Lacks and her family is gripping. While the HeLa cells were in wide use in laboratories throughout the world her family had no idea until 1975 that their mother’s cells had been harvested and continued to exist. Following their identification as the family of the HeLa cell donor they are harassed and besieged by reporters and other charlatans. The author in a skilled way shows the two very different versions of the same events told by the mostly white medical establishment and the poor black Lacks family. Henrietta had five children, only one of whom was old enough to have memories of her. The children were each haunted by the existence of these cells and the effects on them were different. Her daughter, Deborah is a central character in the story. Never really knowing her mother she searches for some aspect of her mother’s life in the cell culture story. Hampered by the lack of an education she slowly, with the author’s help, comes to know the impact that her mother’s cells have had in medicine. I was really moved by the growth that Deborah shows over the course of investigating these events. I was also moved by her lack of anger against the medical field and institutions that had treated her family with such wanton disregard. In the end for me, she was the most memorable character assuming a kind of goodness and dignity denied to her mother.

Lastly what I liked about this book is the way the author presented the story in a non judgmental way. Both the family and especially the medical establishment committed acts that did no one proud. She is not condescending nor patronizing to the Lacks family; she does not condemn the medical establishment. It would have been easy to sensationalize this story but she didn’t, she just calmly and in a very fair and straightforward way reported it.

This book tells a poignant human story surrounded by compelling medical science. Folks with no science background could and should read this book but it should be required reading for medical professionals. It is hard to believe that this was a debut book for Rebecca Skloot, here’s hoping for many more!