Wednesday, December 10, 2014

Brain on Fire: My Month of Madness

Anti-NMDA receptor encephalitis. Now that’s not something you hear every day. Healthcare gurus can move on, but listen up laymen! Humans have something called a blood-brain barrier, which selectively determines what is allowed to pass from our blood to our brain juice. Picture Gandalf wielding a staff and yelling, “YOU CAN NOT PASS” at unsuspecting molecules. Or Gretchen Wieners from Mean Girls snapping, “You can’t sit with us!” Just substitute “sit” with “swim in extracellular fluid”. 

         For the most part, the lymphocytes that comprise our immune system do not have their names on the bouncer’s list and are not allowed into the brain juice; however, on days when the barrier is feeling especially cheerful, he lets a few B-cells and T-cells mosey inside for a routine checkup. For reasons unclear to people more medically competent than me, Susannah Cahalan’s lymphocytes decided to squeeze past the blood-brain barrier without permission and stage a coup d’état. Her immune system handled the situation like an evil dictator who decides that if he’s going to be destroyed, everything else might as well go down in flames alongside him. It created an army of pathologic autoantibodies—proteins which assault the body’s healthy cells. In Susannah’s case, these autoantibodies started to attack her NMDA receptors, which are responsible for overseeing important operations like memory and neuroplasticity. Justifiably angry, her brain became enormously inflamed, and formerly functioning synaptic connections went completely haywire. Her lymphocytes had crashed her brain’s party, lit a bunch of candles to set the mood, and then knocked them all over the place, leaving her brain on fire. Symptoms of this disease include, but are not limited to: paranoia, psychosis, catatonia, violent episodes, seizures, speech difficulties, and a myriad of cognitive impairments. Susannah Cahalan, the author of Brain on Fire*, and survivor of this debilitating disease, exhibited all of the above. Casual.

The autobiography is split into three, equally mesmerizing sections. The first, “Crazy”, details her out-of-the-blue physical and mental deterioration. At one moment, she is an ambitious extrovert, working as a successful reporter for the New York Post. The next, she is plagued by paranoid delusions and holds a tenuous grasp on reality. Multiple feeble diagnoses are thrown at her in an attempt to explain her sudden capriciousness, none of which fit the bill. Her case is extraordinarily inexact and, in her twisted state of mind, she is not the most accommodating patient. She repeatedly tries to escape from the hospital, convinced that the medical personnel are trying to hurt her rather than help. At one point, she punches a nurse in her fury; at another, she randomly rips her IV out of her arm mid-insertion.

The second chapter, “The Clock”, introduces a new doctor—a highly esteemed neurologist who makes her life-saving diagnosis. As Susannah’s mother says, Dr. Najjar is “a real-life Dr. House” (Cahalan, 136). Note: he is not nearly as sexy as Hugh Laurie. While having a name for her disease and being able to react in accordance is certainly a positive thing, it does not eliminate her suffering. To confirm the diagnosis, she has two spinal taps and a brain biopsy (a brain biopsy?!?). To combat the sickness—throw some water on the flames, if you will—she is put on an aggressive treatment regimen involving steroids (with numerous side effects), lengthy infusions to correct her immune deficiencies, and plasmapheresis (a fancy way of saying that her bad plasma is replaced with good plasma). Furthermore, the implications of her illness are largely unclear. Though there is finally a face to her diabolical disease, the journey afterward is quite uncertain. After all, in the spring of 2009, she was only the 217th person to ever be diagnosed with anti-NMDA receptor encephalitis (Cahalan, 226). There was not even a Wikipedia page for her disease at the time (Cahalan, 207)! How the hell did anyone learn about it? Dr. Najjar estimates that “90 percent of people suffering from this disease during the time when [she] was treated in 2009 went undiagnosed” (Cahalan, 223). How many thousands of people were incorrectly labeled with a mental illness when the underlying problem was immunological and potentially reversible? She had the luxury of financial resources, familial support, access to exceptional practitioners, and a stroke of timely luck. Just a few years prior to the onset of her symptoms, developments at a lab at the University of Pennsylvania made her definitive diagnosis possible.

The final portion, “In Search of Lost Time”, follows her discharge and subsequent maneuvering of post-hospitalization obstacles. Her cognitive deficits proved especially tough to overcome and she repeatedly scored in the “borderline impaired range” on multiple tests (Cahalan, 191). Susannah was deeply aware of the fact that her previously sharp mental skills were no longer up to par, which exacerbated the humiliation she already felt in social situations due to her altered appearance. You don’t waltz out of the hospital after such a traumatic event looking like a Victoria’s Secret model. For months, her self-worth was shattered. Her disease had been mildly publicized, but few people knew the details of her illness or appreciated the intricacies of her sufferings.

Throughout it all, in spite of the madness, spurts of the old Susannah would sporadically surface, giving her family and boyfriend hope that the real her was shoved down in there somewhere, capable of reemerging. When she was admitted to the hospital following a slew of seizures, her loved ones had no idea what the outcome would be. Yet, they remained incredibly loyal to her in her time of need. Her boyfriend, Stephen, is the man. I mean, they had only been dating for four months before her psychotic breakdown erupted.  During the recovery process, Susannah questioned why he had so solidly stood by her side. His response? “Because I love you, and I wanted to, and I knew you were in there” (Cahalan, 184). Someone get Ryan Gosling in here and let’s make a Nicholas Spark film…this is too good (I later discovered that a theatrical adaptation is in fact underway, produced by Charlize Theron and starring Dakota Fanning)*. Honorable mention to her mom and dad, who were also awesome at coping with the situation at hand.

Susannah recuperated from her tragic, and nearly deadly, circumstance like a total rockstar. It is unfathomable to me how she managed to move from: mysterious psychotic affliction >>> similarly cryptic diagnosis that completely wrecked her cognitive abilities >>> best-selling author. My first year of college, I was in and out of the university hospital for a couple of months with a kidney problem that left doctors puzzled. At one point, I was told I had lupus; at another, I was informed that I would need to be put on dialysis. Thankfully, I ended up healthily strutting out of there with a dual middle finger to my kidneys for succumbing to some rando virus. It was terrifying at the time, but it has become the brunt of many kidney donation jokes and I like having those in my comedic arsenal. Sure, I was upset at the prospect of lupus ruining my ability to tan, but I was not losing my goddamn mind. Susannah was on the verge of being institutionalized. Everything was falling apart for her! “The mind is like a circuit of Christmas tree lights. When the brain works well, all of the lights twinkle brilliantly, and it’s adaptable enough that, often, even if one bulb goes out, the rest will still shine on. But depending on where the damage is, sometimes that one blown bulb can make the whole strand go dark” (Cahalan, 83).

She also happens to be a phenomenal writer. Not entirely surprising coming from an accomplished journalist, but still. I was beyond impressed with her harrowing recollection; she articulated her emotional rollercoaster in a manner that made me feel like I had experienced it with her. Furthermore, she is stunningly adept at translating complex neurological processes in digestible terms. You can tell she did her research. She is the poster-girl for advocating an idea that I have argued for for quite some time—the necessity of cooperation among psychological, neurological, and immunological sciences (Cahalan, 225). You can have all sorts of capable doctors assisting with your case, but the real profundity occurs when different fields are working in unison.

Between her riveting story and her captivating writing, I give this autobiography 5 out of 5 camel humps. Tell me you don’t like this book and I will tell you that you don’t have a heart. Her struggle is incredibly moving, the response to her aberrant brain is humbling, and her ability to rise above such a helpless situation brings me joy. The book was so spellbinding that I finished all 250 pages of it in less than 29 hours. This is a testament to the author’s allure as well as the fact that I clearly have no life. I gobbled this book up like I did with Gone Girl, except this time I was actually learning about something valuable rather than eagerly reading about a malevolent bitch. I recommend this to anyone and everyone who has a soul and wants to learn a little bit about how your brain can screw you over.

*Cahalan, Susannah. Brain on Fire. New York: Free Press, 2012. Print.

*“Brain on Fire.” The Internet Movie Database., Inc, n.d. Web. 10 Dec. 2014. <>.

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