The Inflamed Brain and The Unreliable Narrator

Book review: Brain on Fire, by Susannah Cahalan (Amazon / Book Depository)

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.

Then 24-year-old New York Post reporter Susannah Cahalan’s memoir of her mysterious illness opens with a scene that, when I tried to read this previously, hit too close to home. She thinks she has bug bites and, this being 2009 in New York City, came to the conclusion her apartment was infested with bedbugs. She goes ahead with fumigating even after an exterminator finds no trace of bugs. The intense paranoia is the first sign that all isn’t right in her perception, and, by extension as we see her precarious situation ominously decline, her brain.

Having lived through the height of the bedbug epidemic in New York, it was TOO REAL for me. I never had an infestation, but I developed a lingering psychological fear anyway, witnessing what friends went through plus several false alarms. As much positive buzz as this book generated around its release and despite its popularity since, that plus not being overly keen on medical memoirs, which usually make me feel more uncomfortable than enlightened, meant I shelved it for a long while.

Two things made me pick it up again. First, I read an advance of an absolute page-turner about the crimes and capture of mysterious serial killer Israel Keyes by Cahalan’s Post colleague Maureen Callahan, who thanked Cahalan for editing help in the acknowledgements. That book was so well written and engrossing it made me curious to read Cahalan’s own writing. Then I saw Cahalan will publish her second book this fall, a narrative history about psychologists who went undercover in asylums to test the system of diagnoses and treatments. I thought I should read her memoir first, despite it sounding like a link between the subjects won’t be heavily significant, besides Cahalan’s own frustrations at initially being diagnosed as mentally ill when her affliction had different origins.

Was I ever glad that I tried it again. It is such a haunting and impressively structured book. Cahalan walks the reader through what she remembers and felt as her descent into paranoia and public breakdowns, including at work, gave way to seizures, turning into a stay at New York University’s Langone Medical Center. There, a team of doctors in the EEG monitoring unit tried to determine the underlying cause of her strange array of symptoms. On the way to the discovery that her brain was inflamed, she was falsely diagnosed with bipolar and schizoaffective disorders, alcohol abuse, and other unhelpful detours before ultimately getting the care she needed from one perceptive doctor who was able to piece together the many odd and disparate-seeming symptoms she’d displayed.

But a happy ending wasn’t immediately in sight – she’d lost a blacked-out month while hospitalized, shaking her confidence and understanding of herself and her abilities, and faced a long, rocky recovery and total upset of her former independent life.

…Shame emerged out of the precarious balancing act between fear of loss and acceptance of loss. Yes, I could once again read and write and make to-do lists, but I had lost confidence and a sense of self. Who am I? Am I a person who cowers in fear at the back of a spin class, avoiding everyone’s gaze? This uncertainty about who I am, this confusion over where I truly was in the time line of my illness and recovery, was ultimately the deeper source of the shame. A part of my soul believed that I would never be myself, the carefree, confident Susannah, again.

What’s unique about this memoir of unusual experience is how little Cahalan remembers from her ordeal, making her an unreliable narrator of her own survival story. As she slid further into hallucinations and a catatonic state, her memories of reality receded. With her own fractured or nonexistent memory as an obstacle to narrative, she pieces it together using video footage from bedside monitoring and interviews with hospital staff and concerned loved ones.

Although Cahalan’s experience was terrifying, her storytelling doesn’t rely on shock or horror to make its emphasis felt. She provides insightful background on this rare neurological condition, finally diagnosed as anti-NMDA-receptor autoimmune encephalitis (the body’s autoimmune system attacking the brain). It’s only recently been better understood – Cahalan was the 217th person diagnosed – and despite the alarming implications of a rare, potentially deadly and seemingly easily misdiagnosed condition, this remains a gripping story of a challenge overcome and not a vehicle for paranoia.

Also setting it apart is Cahalan’s eloquence in telling her story and conveying how harrowing and confusing it was to put her life back together while on the road to recovery. Her voice is strong but vulnerable simultaneously, and beautifully descriptive – very few words wasted here. I don’t often get that impression, especially in memoirs.

Clear, often lovely prose and a quietly powerful story about reestablishing identity make this part-memoir, part-medical mystery with near thriller-like suspenseful moments so compelling.

When you think all is lost, the things you need the most return unexpectedly.

Brain on Fire: My Month of Madness
by Susannah Cahalan
published 2012 by Free Press

Amazon / Book Depository

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35 thoughts on “The Inflamed Brain and The Unreliable Narrator

  1. Oh man, I can’t believe you lived in New York during the bed bug epidemic. I have major hypochondriac tendencies so I think that would have driven me literally and figuratively insane. This book sounds SO brilliant, I’m not sure I’d be able to read it because again, hypochondria, and I do not do well with medical memoirs (I made it like 20 pages into When Breath Becomes Air before realizing that trying to read that book was an incredibly stupid decision). But I’ll definitely keep it in mind, if ever the mood should strike.

    Liked by 1 person

    1. That’s why I put it aside for years, I saw the bedbug thing was being used to illustrate her paranoia, but I’m telling you, it was terrifying and it felt like it was EVERYWHERE. They were in the library!!! When I consider living in NY again, I still hesitate because of bedbugs, and I never even had them, the fear was THAT BAD. I did some bizarre things of my own in fear of them so I was like 1) reading this is taking me back to my crazy place, and 2) exterminating as a precaution doesn’t sound unreasonable at all to me!

      That’s also why I mentioned that I’m hesitant about medical memoirs but thought this one was so exceptional. I DNFed one recently because it was flipping me out too much, but this book is just so well done and captivatingly written that it didn’t have a scary, unsettling effect on me, which I feel like is saying a lot. I already knew I wouldn’t be able to manage When Breath Becomes Air, for example, you’re brave to even try it!! It’s definitely worth keeping in mind if you ever feel up to it, I think it’s worthwhile but I also completely get not wanting to think about the subject matter!

      Liked by 1 person

      1. Gahh I cannot even imagine. A couple of years ago I stayed with a friend in NY whose neighbor had just had a bedbug situation, and that was terrifying enough. I can’t blame you for being afraid to ever move back!

        But that’s good to know that this wasn’t too much – maybe I shouldn’t hold up When Breath Becomes Air as the standard for all medical memoirs. I’ll definitely keep it in mind! Maybe I’ll pick it up in a bookstore and peruse to see if it’ll terrify me or not.

        Liked by 1 person

      2. Ugh that does sound terrifying! That’s what was so awful about it, you could be as vigilant as possible (even then, those little monsters found ways) but if your neighbor got them, forget it, they’re probably coming your way.

        Definitely peruse it and see if it’s bothersome in that way…I think it’s a pretty good candidate for one where you can appreciate the story without being sucked into the anxiety of it, but these things vary so much!

        Liked by 1 person

  2. Terrific review. I pretty much avoid every book involving anything about a disease or death or grief or mental illness… I’m such a wimp and very easily influenced to imagine that I have whatever condition the author is relating. I admire the fortitude of those readers who read them! This one does sound exceptionally well-written, though.

    Liked by 1 person

    1. I completely get that. I have that happen a lot too, but I’m particularly bothered by the medical ones. Even if I don’t have any symptoms that match I get freaked out over the possibility of these things ever happening. I can’t remember why I even bought this one, knowing that! But for some reason I didn’t have that problem of getting anxious with it, I think because she just keeps the narrative moving well and it’s so engrossing to read.

      Liked by 1 person

    1. It had some moments that haunted me as well! I was also so impressed with the writing, I think when I tried to start it before it didn’t quite grab me, but this time I really appreciated it. Can recommend this one wholeheartedly, glad it sounded good to you 🙂

      Liked by 1 person

    1. Thank you!! It’s such a great read. I wonder if those moments would translate to the movie, because so much of it is in her writing and the way she sets events up. I’m still not sure if I’m going to watch the movie, I really did love the book but I heard the movie wasn’t that good!!!

      Liked by 1 person

  3. Sounds like something I need to read. That is absolutely terrifying! I can’t imagine going through that.

    As far as bedbugs, I have a group of acquaintances who prank each other relentlessly and one of them helped pull off a really embarrassing prank by letting the perpetrators into the house of a friend he was house sitting at. The victim eventually got the former housesitter back for his betrayal by preying on his extreme fear of bedbugs. (The collaborator had once had a bad experience with bedbugs.) He went to the collaborator’s rented house while he was at work and got the guy’s twin brother to let him in (they were all friends). Then he took red food dye and dotted his pillow and sheets with it to simulate blood from bedbug bites (a classic sign of infestation). Anyway, the guy freaked out and went to extremes which included dragging his mattress outside. But the red dots reappeared. He got to the point where he was convinced they must have gotten into his laptop through the DVD player (this was back in the late 2000s) and he was about to disassemble it when they finally revealed the prank.

    Liked by 1 person

    1. Your poor friend!!! That’s the kind of thing that would completely flip you out if you’re already panicked about them. I never even had them but I was so hyper-alert about potential signs that I was misinterpreting everything and driving myself nuts. I can’t believe they put him through that!

      Her condition was terrifying but the book was so interesting in how she pieced the story together when she was effectively missing for so much of it, and even after regaining her health, still felt like her personality had changed somehow. It was a really great read.

      Liked by 1 person

      1. Well, the friend, when he was house sitting, let the other friends in and they ‘borrowed’ the homeowners swimming trunks. They’d already purchased dissolvable thread and found a seamstress through Craig’s list. She restitched the trunks. Then they threw a pool party bbq and declared a cannonball competition among the guys. So, the guy who ended up having his trunks fall off mid-party thought the house sitter deserved it.

        Anyway, I’m definitely going to read this soon.

        Like

  4. I really enjoyed this one too! The writing really was fantastic. While I loved the interesting information the author included, I did also find her story harder to put down because this seems like such a terrifying experience.

    Liked by 1 person

  5. I read this book a while ago. I love reading about psychology and related conditions. I’m so glad you decided to focus on non-fiction books. It’s the first one I’ve seen in a sea of blogs that review fiction.

    Liked by 1 person

  6. Great review – says all the things I would say if I could construct a review! Just finished this book and found it very impressive. I learnt more about the brain from her story than I would from reading an impersonal popular science book. I am finding I like books written by journalists, I like their clear, fact based writing and lack of flummery. (Possibly I just made that word up, I mean lack of melodramatic poetic stuff..) On a side note I am becoming concerned about the New York bed bug situation, of which until fairly recently, as a UK dweller, I was unaware. It’s popped up in this book and in the Megan Fee book, Places I Stopped on the Way Home – Fee does actually have them. We are going to New York for family sight seeing in October and I really don’t want to bring anything like that home… Interesting too to contrast this book with Fee’s, Fee is sad and lonely because she can’t find the One and has lots of terrible boyfriends; after reading of Cahalan’s terrible health crisis I felt slightly impatient with Fee’s twenty something self-absorption, which is very unfair of me…

    Liked by 1 person

    1. Thank you! That’s such a good point, I also loved learning so much about the brain here, just incredible. She’s really an exceptional writer, I thought she wrote so clearly without it seeming overly basic or a just-the-facts tone. And yet no flummery either (it IS a real word, I looked it up!!)

      I don’t think it’s unfair what you said about comparing the experiences of the two at all, it’s why I think I struggle with books like Fee’s. They often read as shallow and self-indulgent (even though I’ve had similar experiences, but I know they’re not all that interesting!!) and it’s hard to find a way to spin dating dramas into something more meaningful like Cahalan does with her experience. But even in medical memoirs it’s not always the case! I gave up on one a few months ago that was so whiny and navel-gazey even though the author also had a horrible medical incident, I think it’s all in the writing and how they frame their story.

      Don’t worry about your New York trip, hotels and vacation apartments are generally on top of it nowadays, from my experience, since one review claiming bedbugs means the end for them! I’ve been back many times since I moved staying at friends, Airbnbs, and hotels and never had a problem. Just check the mattress when you get there for any small dark spots, and I never use the dressers or wardrobes. If you have any suspicions, like getting bites, put your suitcases with all your things inside in the shower/bathtub until you can change hotels. And don’t sit on any of the wooden seats in the subway stations!!! There used to be a bunch of bugs and just generally gross things there. Otherwise, you’re really probably fine!

      Liked by 1 person

      1. Thank you so much for your bedbug advice, very kind of you. You really do provide a comprehensive service here on Whatsnonfiction!

        Liked by 1 person

  7. Also, I keep meaning to ask you: is there a system you have re ratings: I notice that sometimes you rate books out of 5, and sometimes you don’t (or maybe I am not finding it in some reviews). The nerd in me gets very excited by a 4.5 out of 5! I need to get out more…

    Liked by 1 person

    1. I know, I’m odd like that, sometimes I don’t have a clear idea of how to rate so I leave it off if I have to think about it too much! I’m also kind of a tough rater in general and a 3.5 in my mind is really good but enough to turn off other readers, so I’ll omit it if I think it might be a deterrent when it’s just my personal feeling or connection to the material, things like that. But a 4.5 is definitely really high in my eyes! I like the wording they use on Goodreads and keep that in mind as a general framework, so a 2 means it was ok, 3 is I liked it, 4 is really liked it, 5 is amazing/perfection.

      Liked by 1 person

      1. I see, of course, how one rates a book is so personal and for me also depends on my current mood and what is happening in my life at the time. Have you ever done a “best nonfiction you have ever read” list? Would love to see your picks. I would be hopeless, I am always wildly enthusiastic about the last book I read…

        Liked by 1 person

      2. I do mid-year and end-year favorites lists of the year’s new releases (here’s last year’s: https://whatsnonfiction.com/2018/06/30/favorites-of-the-year-so-far/;
        https://whatsnonfiction.com/2018/12/23/25-favorites-from-2018/)
        plus my favorites that weren’t published that year (https://whatsnonfiction.com/2018/12/26/pre-2018-favorites/). It is tough, I always feel so enthusiastic about what’s freshest in mind! I did do a nonfiction favorites post of sorts for the Nonfiction November event a couple years ago, that’s the closest I have to an all-time favorites list but honestly still feels so incomplete!! https://whatsnonfiction.com/2017/11/24/nonfiction-favorites-for-nonfictionnovember/

        What are yours?

        Liked by 1 person

  8. Thank you for these links, sorry I should have just searched up your blog. I look forward to reading these posts, I so so love a “best of” list. Sort of a Make Up Alley Greatest Hits for Books 😉

    Like

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