“My tongue twisted when I spoke; I drooled and, when I was tired, let my tongue hang out of the side of my mouth like an overheated dog”.
A self-described Beautiful Mess, Ms. Cahalan employs a straightforward and in your face candor throughout the account of her battle with NMDA-receptor autoimmune encephalitis. While some chapters are uplifting, others are unnerving with first hand descriptions of partial seizures and her inability to perform tasks such as being able to put simple words together.
Exposing herself through many intimate and painful moments, the author never tries to paint herself in a positive light. Instead, she pens this memoir as a reflection of what I can only imagine to be a terrifying glimpse into the hell of what each of us have the potential to be thrust into. While some readers may think labeling the events of a singular month as a memoir is a little misleading, I feel it’s justified based on the fact the amount of suffering endured was more than enough to last a lifetime.
Due to the debilitating nature of the disease, Cahalan employs third party views combined with her own experiences to help portray the depth of madness she felt. Not only does this create empathetic stirrings of compassion for Susannah but also helps remind the reader of the loved ones that are affected by this devastating sickness. Bringing to light how quickly an illness can strike, such as NMDA-receptor autoimmune encephalitis, the narrative also reveals how easily an overworked physician can dismiss someone’s illness leading to damaging, even fatal, results. The development of this disease may be preceded by flu-like symptoms or that of an upper respiratory infection which, normally, would be no cause of great concern and although Ms. Cahalan doesn’t lay blame on the initial diagnosis made incorrectly by the doctor, she does say that it is an area that needs to be addressed within medical systems.
In vivid description of filmed episodes of her hospital stay, the author writes: “(s)uddenly I sit up and start to inhale rapidly without exhaling… my arms rise straight out in front of me…I do this so leadenly that it looks like stop-motion animation.” “I extend my arms straight out again…but my hands are bent downward at the wrists like those of a T. rex. Stephen gently places them back by my sides…but my hands return to the extended position with that forty-five degree angle…as if held up by strings.” In truth, the likening of similarities between the movements of those who suffer with NMDA-receptor autoimmune encephalitis and the undead may seem a little farfetched but in a society obsessed with zombies it seems the best depiction to enable the reader to envision what it would feel like to have your mind and body taken over by something uncontrollable.
After reading, the remaining though that has stayed with me is in regards to the sentiments we feel towards those who have a diagnosable mental illness as opposed to those who do not. Do we, as a society, treat these people differently? Is this differential treatment one that should be acceptable? If not, is this a change that must be made individual or within society as an entirety?
I would highly recommend Brain on Fire to anyone interested, not only in medical mysteries or psychology, but also to those who enjoy the satisfaction of being able to relive someone else’s experiences in overcoming hardships. By no means do I feel this is a ‘feel good’ book but in a society where bad news equates to front page news, triumph over tragedy wins hands down for me.
Should you be interested in borrowing this book, you can request it here via the NEOS system. Information about the disease itself can be found online here through the Autoimmune Encephalitis Alliance.