BRAIN ON FIRE: Virtual Book Club Discussion

Did you read the first “Book of the Month”?! If you’re looking for that inspiration in your life to keep going in the face of struggle look no further. Susannah Cahalan graciously represents this. Although her circumstances were devastatingly difficult, and probably unlike anything we have ever heard of before, we can all learn from her and her experiences. This book not only teaches you about a very interesting topic (anti-NMDA receptor encephalitis), but also delves into the way patients are treated within the health system today when their illness can not be physically seen. WARNING: there may be spoilers ahead!

AntiNMDA receptor encephalitis. Susannah Cahalan was only 24 years old when she heard those words. That diagnosis. Just imagine how scared she already was after spending a month in the hospital, not behaving like herself, and how even more terrified she became after hearing that. She worked for the New York Post and was a super intelligent young woman, but these are not common words to see or hear. This was a VERY RARE auto-immune disease that supposedly she was battling. The doctor described it to her family by saying that essentially, “her brain was on fire.”

What is anti-NMDA receptor encephalitis? What is encephalitis? According to the Mayo Clinic, Encephalitis is defined as “the inflammation of the brain, often due to an infection, which can be bacterial or viral. It can also be caused by an auto-immune condition.” It can be life threatening. Encephalitis can cause symptoms such as headaches, confusion, hallucinations, weakness, seizures, and more. Susannah was diagnosed with Anti-NMDA receptor encephalitis. If you look on the Anti-NMDA Foundation website (antinmdafoundation.org) you will find loads of information. According to this foundation, “Anti-NMDA receptor encephalitis is a disease occurring when antibodies produced by the body’s own immune system attack NMDA receptors in the brain. NMDA receptors are proteins that control electrical impulses in the brain. Their functions are critical for judgement, perception of reality, human interaction, the formation and retrieval of memory, and the control of unconscious activities (such as breathing, swallowing, etc), also known as autonomic functions.” You can see why this book is titled “Brain on Fire: My Month of Madness!”

WOW. Our bodies are a complex system. The fact that there are diseases out there people don’t even know about is scary. It is also scary that some of the symptoms listed above can be categorized under the wrong diagnosis. Even a psychiatric diagnosis that can be easily dismissed in today’s world. This tragically happened to Susannah. She was initially labeled as schizophrenic. According to the widely accredited “Diagnostic and Statistical Manual of Mental Disorders”, also known as DSM-5, Schizophrenia is a severe and chronic mental disorder characterized by disturbances in thoughts, perceptions, and behavior. It usually appears later in life, most commonly young adults in their 20s. Symptoms can include: delusions, hallucinations, disorganized speech, grossly disorganized or catatonic behavior, and negative symptoms (diminished facial expressions). For example, Susannah was having hallucinations and delusions involving bugs and showing erratic behavior unlike her normal self at work and towards others. You can see how people immediately thought this was psychiatric related.

After Susannah was diagnosed and treated her recovery did not stop there. In fact, many people do not make a full recovery from this terrible disease. The earlier you are diagnosed with a rare disease like this the better the prognosis is. Susannah was diagnosed in the late stages after her parents, and significant other, had pushed for more doctors to see her for a second opinion. They believed there was more going on than the psychiatric illnesses she was initially being diagnosed with. They knew she was still in there and did not give up on her. Well, they were right and finally got the answers they needed. Unfortunately, at this point Susannah was “catatonic” in an NYU hospital epilepsy ward. Which means she was essentially immobile and unresponsive. Just think about the recovery Susannah had to face to go from being immobile to writing a memoir about her experience. What an amazing, strong woman who did not give up in the face of struggle.

The doctor that figured it out is named Dr. Souhek Najjar. And the way he did this was simple yet fascinating. He had her draw a clock. Yes, just a clock with a pen on a blank piece of paper, nothing more. What happened next when Susannah drew the clock was mind opening. She only drew exactly HALF of the clock and because of this the doctor was able to conclude that she had inflammation on the right side of her brain. Encephalitis. She did not have a psychiatric illness after all.

Now, there is absolutely nothing wrong with having a psychiatric condition of course. Having a mental health diagnosis is okay, if it accurately fits the patient (I have two myself). But in Susannah’s case it did not fit. This caused delays in her treatments, symptom progression, and therefore a longer recovery time after. Like I said, anti-NMDA receptor encephalitis is very rare and difficult to diagnose. However, the way society recognizes the importance of mental health versus versus physical health is unfortunately still vastly disconnected today. Before Susannah’s symptoms progressed to ones that could be seen, they were all in her mind. I think this may not have mattered in her case if the mind, body, and spirit were thought of as one more often in our world.

Holistic Care is what I am talking about. Holistic health is described by The American Holistic Health Association in an article written by Suzan Walter, the founder and current president. She writes “holistic health is based on the law that a whole is made up of interdependent parts. The earth is made up of systems, such as air, land, water, plants, and animals. If life is to be sustained they cannot be separated, for what is happening to one is also felt by all of the other systems. In the same way, an individual is a whole made up of interdependent parts, which are the physical, mental, emotional, and spiritual. When one part is not working at its best it impacts all the other parts of that person.” Anxiety is a great example of this. When someone is anxious they not only feel this within their mind but it can only progress to physical symptoms as well. For example, heart racing, insomnia, fast breathing, headaches, and nausea or stomach ache. Holistic health recognizes all symptoms and all aspects of health, not just physical.

Unfortunately, there is still a lot of dissociation between the mind and body-mental health and physical health. Just as a mental illness can lead to physical symptoms (like anxiety), some physical conditions can lead to emotional disrupt in an individual. The National Alliance on Mental Illness (NAMI) website is a great resource for statistics surrounding the treatment and prevalence of mental health in our world today. This helps put things into perspective.

MENTAL HEALTH STATISTICS- lets take a look at the stats:

“The average delay between symptom onset and treatment is 11 years.”

“43% of adults with mental illness get treatment in a given year; 64% of adults with a serious mental illness get treatment in a given year; and 51% of youth (6-17) with a mental health condition get treatment in a given year.”

“1 in 5 U.S. adults experience mental illness; 1 in 25 experience a serious mental illness; and 17% of youth experience a mental health disorder.”

YES THESE ARE REAL. Millions of people are affected by mental illness across the country but not everyone is getting the treatment they need. There may even be more that are not reported. A reason for this can be related to the mental health stigma that our world faces today.

What is mental health stigma? According to The Mayo Clinic “stigma is when someone views you in a negative way because you have a distinguishing characteristic or personality trait that’s thought to be, or actually is, a disadvantage (a negative stereotype). Stigma can lead to discrimination.” The Psychology Today website breaks it down. Social (public) stigma refers to “prejudicial attitudes and discriminating behavior directed towards individuals with mental health problems as a result of the psychiatric label they have been given.” And Perceived (self) stigma refers to the “internalizing by the mental health sufferers of their perceptions of discrimination.” Taking all of this into considering-holistic care related to mental health stigma-you can see how Susannah Cahalan suffered even more while waiting for her appropriate diagnosis. She spend an entire month in the hospital without really knowing what was going on inside of her. Some of it she does not remember and had to research her own self to write this memoir.

So, how are we supposed to care for and treat other people holistically if we are faced with today’s prejudices and discrimination? As a nurse I see how hard this can be. From a patient’s AND a doctor’s perspective. Medicine is a hard field to be in and sometimes it is very hard to diagnose people, especially if it’s a rare disease! I see how sometimes patient’s feeling and emotions are overlooked. I see how they can be prescribed medications in the hospital without a proper diagnosis from a psychiatric professional, simply because they are acting “crazy”. Sometimes patients are even admitted to the wrong facilities because people jump to conclusions of them having a psychiatric illness, or worse there is not enough beds in the facility they need. In Susannah’s case it could have been the opposite. She could be sitting in a psychiatric hospital right now, or worse, dead. It is truly heartbreaking.

Breaking the stigma will not be easy, and it will take time. But Susannah Cahalan’s inspiring book “Brain on Fire: my month of madness” truly helps bring awareness to the “mind” and “body” disconnect. Her own diagnosis Anti-NMDA receptor encephalitis was a physical disease (body) that presented with emotional symptoms (mind). She not only brings awareness to mental health disorders but also to rare diseases and the difficulty in diagnosing and treating them. She brings us one step closer to recognizing holistic care and the importance of it for us to survive as humans.

Lastly, I wanted to touch on a quote from the book that everyone can relate to. Susannah Cahalan said- “Someone once asked, if you could take it all back, would you? At the time I didn’t know. Now I do. I wouldn’t take that terrible experience back for anything in the world. Too much light has come out of my darkness.”

Think about this for a second. How true is this for all people? Every single experience we face daily makes us who we are as a person. What we decide to take out of those experiences is our decision. It can be so hard to overcome what happens to us and the mental hardships we are left with. It can be so hard to move on. But what if you don’t have to? Think about it. What you face in your lifetime makes you YOU. It will always be a part of you. You don’t have to move on. EMBRACE IT.

Everyone has a right to define what they view as a struggle. Some people may face more difficult struggles than others and it can happen at every age. This only makes them stronger. All hardships are important and valid no matter how severe. I look up to so many people and admire the courage and intelligence they have gained from their experiences. So, If you have faced experiences in your life that have pushed you to a breaking point be grateful. You cannot turn back time and take these back, all you can do is keep moving forward. Use these experiences to help others and bring light to the world like Susannah did and don’t give up like her. Be proud of yourself even when you feel like no one can relate to you.

*Susannah Cahalan is a member and Ambassador of “The Encephalitis Society” (the brain inflammation charity). The website is: https://www.encephalitis.info. The support line is +44 (0) 1653 699599. You can go to this website for more information regarding encephalitis and how to get involved!

*Brain on Fire:My Month of Madness was adapted into a film in 2017. The book was published in 2012 and is a New York Times bestselling autobiography.

RESOURCES: https://www.antinmdafoundation.org/the-illness/what-is-anti-nmda-receptor-encephalitis/ ; https://www.mayoclinic.org/diseases-conditions/encephalitis/symptoms-causes/syc-20356136 ; https://www.psycom.net/schizophrenia-dsm-5-definition/ ; https://www.mayoclinic.org/diseases-conditions/mental-illness/in-depth/mental-health/art-20046477 ; https://www.google.com/amp/s/www.psychologytoday.com/us/blog/why-we-worry/201308/mental-health-stigma%3famp ; https://ahha.org/selfhelp-articles/holistic-health/ ; https://nami.org/mhstats

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