RA for All: BPL Book Discussion Report: Brain on Fire

On Monday, our group met to discuss the memoir Brain on Fire by Susannah Cahalan.

From the publisher:

One day in 2009, twenty-four-year-old Susannah Cahalan woke up alone in a strange hospital room, strapped to her bed, under guard, and unable to move or speak. A wristband marked her as a “flight risk,” and her medical records—chronicling a month-long hospital stay of which she had no memory at all—showed hallucinations, violence, and dangerous instability.

Only weeks earlier, Susannah had been on the threshold of a new, adult life: a healthy, ambitious college grad a few months into her first serious relationship and a promising career as a cub reporter at a major New York newspaper. Who was the stranger who had taken over her body? What was happening to her mind?

In this swift and breathtaking narrative, Susannah tells the astonishing true story of her inexplicable descent into madness and the brilliant, lifesaving diagnosis that nearly didn’t happen. A team of doctors would spend a month—and more than a million dollars—trying desperately to pin down a medical explanation for what had gone wrong.

Meanwhile, as the days passed and her family, boyfriend, and friends helplessly stood watch by her bed, she began to move inexorably through psychosis into catatonia and, ultimately, toward death. Yet even as this period nearly tore her family apart, it offered an extraordinary testament to their faith in Susannah and their refusal to let her go.
Then, at the last minute, celebrated neurologist Souhel Najjar joined her team and, with the help of a lucky, ingenious test, saved her life. He recognized the symptoms of a newly discovered autoimmune disorder in which the body attacks the brain, a disease now thought to be tied to both schizophrenia and autism, and perhaps the root of “demonic possessions” throughout history.

Far more than simply a riveting read and a crackling medical mystery, Brain on Fire is the powerful account of one woman’s struggle to recapture her identity and to rediscover herself among the fragments left behind. Using all her considerable journalistic skills, and building from hospital records and surveillance video, interviews with family and friends, and excerpts from the deeply moving journal her father kept during her illness, Susannah pieces together the story of her “lost month” to write an unforgettable memoir about memory and identity, faith and love. It is an important, profoundly compelling tale of survival and perseverance that is destined to become a classic.

Let’s move right on to the discussion:

We had 9 liked, 0 disliked, and 3 so-sos.
Opening comments had some nice back and forth:

So factual. Not enough mix with creative. I guess I just didn’t like the writing style
But, she is a journalist and she wrote this like a journalist. Facts come first in that kind of writing.
I am in the health care field, so many of the ah-ha moments I was aware of. Not the diagnosis, but the fact of how the system works.

Since most of the opening comments were about writing style, I steered us a little more formally in that direction by saying, “It is written in a very distinctive style. "

The frequent switches between casual to technical bothered me.
I loved the way she did that because that’s how her life was during this time.
It was so compelling, but I have to say, knowing she ended up okay and wrote this book helped me to get through. If someone else had written the book, I might not have been able to continue. If had I gotten to the end and she died, I would have been devastated.
Yes, the story has a happy ending, but it is hard and scary to read.
The writing style made me feel like I was falling apart as she was falling apart.
Becky, who grew up reading the New York Post told the group that the entire book is sort of written like a Post article-- sensational, quick bursts, easy flowing language, not flowery or beautiful language.
She attacked the story of her disease and recovery like a newspaper story.
Interesting that both her parents kept journals.

Question: Personality...what makes it? Is it static?

I hate to say this, but as she feel apart mentally, I liked her less and less. If she had a physical disease like cancer, I would never have felt this way about her. But because the disease completely changed her personality, she became someone I did not like. [I thanked this participant for being so candid and honest.]
She definitely needed a support system of people who knew who she was BEFORE. They had to fight to get that person back when she was at her worst because the doctors and nurses only saw the crazy person. No one treating her knew who she really was.
Personality is never set. Our experiences shape it.
Trauma can change you forever. She will never be the same carefree person she was before.
She has PTSD, as do her parents and Stephen, probably

Question: Identity...what makes it?

Identity is more significant and deeper.
One person shared something she read by Elie Wiesel about Alzheimers as she was caring for her mother when she was dying from the disease. He described Alzheimers as a book where everything is gone but the cover. That cover is there; it is the identity, but the true person, their personality, is gone. This is what Cahalan is like.
But her identity is forever altered by the fact that she had this disease, went crazy, and almost died. It has become part of who she is.

Question: How did this book change the way you think about memory?

I can’t get over how she remembers clearly that her step father called her a “slut” in the car on the way to the hospital, but it never happened.
The idea that our brains can clearly remember things that never happened is scary.
It is like when you have a realistic dream and you could swear it was all real and actually happened.
Yes, in fact, things that didn’t happen become more real to her than things that did. Her recreation of that fact and how it feels made for a compelling and interesting read.
Drugs and her illness also effected her memory.
There were huge things that happened to her, that she was a participant in, that she has absolutely no memory of.
She had to reconstruct her life and rebuild her memory, but as a journalist, not as the person who it happened to. Weird. The only perspectives she had were from others and the videos of herself.
How much of our own memory is from the perspective of others? Probably quite a lot.

Question: Why did she write this book?

I cannot imagine trying to explain an incident in my life that I had no memory of.
She needed to write the book to heal as a person and to have the confidence to go back to work as a journalist.
It started as a vehicle to get back to work.
As she began to help and touch others, she felt inspired to keep going.

Question: The term mental illness?

I don’t think I could ever use the term “mental illness” again. I think I would call everything just illness.
Yes, we don’t call a heart attack, cardiac illness. Do we call arthritis ambulatory illness? No.
This book showed me that mental illness can have a physical basis.
We don’t know enough to know if something is “mental” illness or “physical" illness, so why use the word mental at all.

Question: The title...Brain on Fire.?

I did not like it because she had an inflammation. That can go back down with little damage. Fire damage can not be so easily fixed.
But an inflammation is hot like fire.
Also, fire can cause quick and sudden change.
I saw it like an electric fire in her brain.
Fire is an emergency always. The brain is the center of us. Fire and Brain together is a bad thing. Very illustrative.
Again Becky shared her NY Post experience. The title of the book was just like a NY Post headline; they are famous for them.

Question: The use of faith in the memoir?:

Faith in its purest sense is used powerfully in this book.
The family has faith that if they keep searching for the truth, they will get her back. They know they might never find it, but they have faith.
They had faith that something was more wrong with her than a psychotic break.
Most importantly they had faith that she would heal.
I saw this book as an extreme example of real love and true faith. Her parents didn’t love each other, but they truly loved her. Stephen had true and deep love for her too.
Their love gave her faith to heal and live.

Some final comments:

Stephen loved her and stayed with her even when the real her was not there anymore.
The two family weddings she goes to during her recovery were very illustrative of how she was doing.
I liked how she described feeling herself coming back as she was typing.
I was so scared for her when she couldn’t read or write. She is journalist and an avid reader. As a reader it terrified me.
She was so lucky. Luck saved her as much as medicine, and she knows that.

We always end with words or phrases to sum up the book and close the discussion:

compassionate
difficult
heartbreaking
scary
search for truth
fascinating
compelling
meaning of illness
resiliency
mistakes in medicine
accurate diagnosis
lack of control
edgy
memory
enduring love

Readalikes: Before I get to similar reads, I want to direct people to Cahalan’s website which has a lot of information and suggested reading lists.

There are a couple of directions you can go here. First, this is a true story of a difficult time. It is hard to read, but has a happy ending. This reminded me of The Glass Castle by Jeannette Walls, about which I clearly said as I was reading it, “their life is horrible, but I am really enjoying this book.” I felt weird saying it then, but it was true then as it is now with Brain on Fire.

During the discussion, someone mentioned this memoir reminded her of Everybody’s Got Something by Robin Roberts. "That was a book about hope too,” she shared.

If you have access to NoveList, there is a great “Recommended Reads” list that contain Brain on Fire. [You can find a link to it in the Brain on Fire entry.] There are many books there which look at the way we learn about and battle diseases, such as The Emperor of All Maladies by Siddhartha Mukherjee.

A few others health and memory related nonfiction titles that may appeal to those who enjoyed Brain on Fire are: