Review #35: Brain on Fire: My Month of Madness, by Susannah Cahalan

I've seen Brain on Fire a few times at the bookstore, and it was the subtitle that kept catching my eye - "My Month of Madness" - and so when I found it on sale, I picked it up. I thought I would be getting a book about a Nellie Bly-style reporter who feigns mental illness to write an expose on our country's health care system. Instead, I got a terrifying account of what happens when a young woman can't get the right diagnosis, and how quickly a disease can spread.

Susannah Cahalan is in her early 20s, an up and coming New York Post reporter, when she first experiences bizarre symptoms that she can't explain. At first blush, it sounds as though she's showing signs of the beginnings of schizophrenia, or perhaps even some sort of bizarre opiod reaction. She scratches at her arms, experiences paranoia, is feverish, hallucinates that her apartment is infested with bed bugs, and finally, begins having seizures. The doctor can't find anything wrong, and sends her on her way, actually sending her to her OB-GYN thinking that maybe she's having a reaction to her birth control. (Which is a move that made zero sense to me, but that's why I'm not a doctor.) The gynecologist can't find anything wrong with her, but recommends that she stop taking her pill, and when the seizures don't go away and her paranoia becomes more extreme, her parents and boyfriend finally step in, and raise holy hell to get her the help she needs.

After hundreds of tests and hundreds of thousands of dollars, during which time Cahalan is often strapped to her bed because of her violent outbursts, she is becoming increasingly catatonic, her fever won't abate, and the doctors are on the verge of giving up, ready to commit her to a mental institution. But then, in a very lucky coincidence, she meets Dr. Souhel Najjar, who is, she says, "the man you go to when nothing made sense". Dr. Najjar gives her a piece of paper and a pencil, and asks her to draw a clock. Cahalan does, but all of the numbers are on one side of the clock, and a lightbulb goes off in Dr. Najjar's head: whatever is happening to Cahalan is happening to her brain. He suspects that she has autoimmune encephalitis, and a second physician, Dr. Joseph Dalmua, confirms the diagnosis. Cahalan's brain is, literally, on fire. 

Autoimmune encephalitis is, essentially, a medical condition in which the body's own immune system attacks the brain. It can affect all ages, races, and genders, but it is most common in young women. In fact, according to the Autoimmune Encephalitis Association, 75% of all autoimmune disease patients are women. Research in to the disease is quite new, and they are still not altogether sure how one contracts it. Sometimes  it begins in tumors generally located in the ovaries, but more often, it appears as though it's a result of exposure to a common bacteria. Cahalan posits in the later part of the book - and this was a running thread when I did further research - that many people who were consigned to insane asylums in the past were actually suffering from the condition, but its symptoms so closely mimic schizoid behavior that physicians misdiagnosed quite a number of patients.

Cahalan's story is impeccably researched. She has no memory of these events, only of waking up in the hospital, so even though she writes in first person, everything had to be reconstructed through hundreds of hours of interviews with her doctors, nurses, coworkers, friends, and parents. She had access to the notebook her parents used to communicate; divorced, they often took turns sitting with her in the hospital and although one gets the sense that their post-divorce relationship wasn't exactly warm and fuzzy, they absolutely presented a united front and fought like hell for their daughter. Some of her time in the hospital was videotaped, and I can't imagine the strength it must have required to watch those videos.

Throughout the book, Cahalan makes a couple of references to the cost of her treatment. In more than one instance, she says that the cost of that month of madness was over a million dollars, and my guess is that's a conservative estimate. There's no mention of what continued maintenance and treatment costs are. Thankfully, Cahalan had health insurance through her employer, but it did make me wonder about the state of health insurance and medical care in this country. Would she have received the same treatment or had access to the same physicians if she were in a public hospital? If she were on a state or federal health insurance plan? What if her deductible was 20%? That's $200,000, for a journalist who is still paying back student loans and probably bringing home less than a quarter of that annually. Brain on Fire isn't the book to dissect the pros and cons of our health care system and Cahalan never makes a statement either way, but it is definitely food for thought.

I wasn't able to find much on what Cahalan is doing now, but a quick, very non-stalkerish Google search tells me that she married Stephen, the absolutely incredibly boyfriend who stood by her during this incredibly difficult time. It appears as though she's still in contact with her doctors and does some speaking about her condition and other rare diseases. I hope she's doing well and is happy and healthy. 

Review #3: Look Me in the Eye: My Life with Asperger's, by John Elder Robison

Recently, someone has come in to my life who was diagnosed with Asperger's a few years ago. At his urging to "read a little about it", I picked up Look Me In the Eye at the public library. (Side note: I am shocked at how little there is out there about this condition.)

John Elder Robison is the brother of Augsten Burroughs (Running with Scissors, Dry), and while I vaguely remember Robison from Burroughs' memoirs, he reminds the reader that he and his brother had "different parents", and having read both brothers' accounts of their childhood, that's very true. Robison is older by several years, born before his mother's descent in to madness and his father's alcoholism became his tragic downfall.

From the beginning, Robison remembers feeling different. He describes trying to make friends at school and in the neighborhood, but not knowing how to go about it, and when he does make the attempt, the kids think he's weird or a misfit. Later, after his brother is born, and his mother goes insane and his father begins drinking himself into a blackout every night, he acts out in larger ways. (There's a particularly uncomfortable scene involving a store mannequin and a power pole that would have ended very differently in this decade.) Finally, he feels he has no choice but to leave - leave school, leave the family, leave his brother, leave town.

The middle part of the story lags a bit for my taste. Robison falls in with KISS (yes, the band, of all things), making pyrotechnic guitars and other special effects. He eventually moves on to work for Milton Bradley, and then finally finds happiness in opening his own automotive garage. While I found it interesting - that's a pretty varied career arc - I didn't particularly want to read about the specifics of the smoke bombs used on stage. But I believe that those very specifics are in keeping with Robinson's personality - it's what's interesting to him - so in a way, I don't know how he could have left them out.

It isn't until the last few chapters of the book that Robison returns to explaining why he does what he does, which was my purpose in picking this up. Those few chapters are extremely enlightening, and paint a picture of a man who, at his core, really isn't all that different from the rest of us. We all have anxiety, we all wonder if we're making the best decision in the moment, we all obsess over certain things, we all wonder if our "flaws" will be passed on to our children. What won me over - because at times Robison's behavior is a little on the jerky side for my taste - were two things: his love and concern for his son, and his obvious love for his wife. "I like married life a lot," he says. And I can't think of a more romantic and honest sentiment.

Robison clearly wants to make a difference by writing this book and I think that he has, if in no other way than he has healed himself - and those he loves - a little bit. I don't know as Look Me In the Eye is The Book on Asperger's - and honestly, I don't know as it should be; maybe it should just be The Book on John Robinson - but I think it's a good start, and I think that anyone who loves someone affected by it should pick this up. It won't unlock the mysteries, but it will shine a little light on things.

Review #8: Wild, by Cheryl Strayed

One of my closest friends hiked the Pacific Crest Trail (PCT) a few years ago. She's an experienced hiker; she did the Appalachian Trail a few years prior to that. (And we're talking through-hike. All eleventy million miles of it. Both the AT and the PCT. This is something I would never do. I don't pee outside, let alone hike. I'm not really sure how it is we're friends.) Anyway, my hiker friend happened to be visiting while I was reading Wild, and I asked her whether she'd read it, what she thought of it. She paused for a moment, gathered her thoughts, and then said, "I liked the book. I'm not sure I liked her, though." And that sums up my feelings about this memoir pretty succinctly.

Cheryl Strayed weaves a good story. She knows how to grab her reader from the beginning by starting out with a story of the forest literally swallowing her boot, leaving her stuck in the woods with nothing but crappy camp sandals, which are little more than knock off Tevas you can pick up at a gas station. Hardly conducive to hiking fifteen miles a day. With this opening anecdote, the reader realizes that Cheryl is a mess, both literally and figuratively.

Reconstructed from her trail journals, Strayed bounces back and forth from her journey to the events that led her to take those first steps in California. She details the tragic death of her mother at 45, the demise of her marriage, the actions that brought about her divorce, her struggle with drugs (heroin - this girl doesn't mess around), and her general feeling of being directionless. She describes the PCT, its wildness and unpredictability, her backpack Monster and the PCT itself almost becoming characters in their own right. Interestingly, it's the other people she meets on the trail - and who only appear for brief moments - that are the most brightly painted, not her family or her friends or her ex-husband, all of whom are written about pretty extensively.

I found Strayed difficult to sympathize with, but perhaps that's the thirty-something in me losing patience with the twenty-something Cheryl. I was shocked at her unpreparedness. This is a girl who had camped but never hiked, who did little to no research beyond buying a book and talking to people at REI, and who walked in to the woods with no direction, no plan, and no money. Perhaps that was the point, but she was so unprepared that, quite frankly, I'm a little surprised she survived. Luckily, and I wish she had spent more time on this, several people helped her out along the way, and by that I mean, taught her what she needed to bring, gave her food, helped her with shelter, and generally did things that kept her alive. 

Wild is touted as a journey from lost to found on the PCT, and I know without a doubt that she was lost when she went in to the woods. But I'm not sure she's as found as she thinks she is. Maybe none of us are.

Review #66: Midnight in the Garden of Good & Evil, by John Berendt

I first read Midnight about ten years ago, maybe more, but two recent trips to Savannah prompted a re-read. We're all familiar (either through the book or Clint Eastwood's film) of the story of Jim Williams, Danny Hansford, and the incomparable Lady Chablis, but with each reading (and each visit), I fall in love with this odd little city a bit more.

For the uninitiated, Berendt's tale begins with him meeting Jim Williams, an antique dealer, to interview him for a piece in a magazine. While in Savannah, Berendt becomes intrigued with the city, falling in love with it, and eventually renting a small apartment in the historic district. He meets several of the city's movers and shakers, and quite a few of its less prominent citizens. Fast forward a few years, and Danny Handford is dead, Jim Williams is on trial, and the entire town is abuzz.

Savannah is a strange, beautiful, wonderful place. It's ancient by American standards, settled in 1733, and at times it gives the air that it hasn't changed much. Berendt captures the magic of the city, painting not just each character with perfect, vivid strokes, but painting the town as well.

Lady Astor is rumored to have remarked about Savannah that the city is "like a beautiful woman with a dirty face". I've always thought a little dirt kept things interesting. Berendt captures Savannah, her beauty, and her flaws with simple, lyrical perfection.

(And for those wondering, Lady Chablis is still performing once a month, and she is every bit as fierce and fabulous as she was in the film.)

Review #63: Chanel Bonfire, by Wendy Lawless

In this heartbreakingly funny memoir, Wendy Lawless details her childhood with her mother, a woman whose picture belongs in the dictionary next to the word narcissist. And the word addict. And substance abuser. And, quite possibly, the word horrible.

Lawless' mother personifies self-indulgence. She whisks Wendy and her sister from trailer parks to New York City to London and back again, cutting their father out of their lives, and wreaking havoc on two very impressionable teenage girls. Swanning about in her blue pegnoir set (and I could just picture the marabou mules that I'm sure went with it), stinking of cigarettes and too much perfume, her mother tells the girls that if they weren't pretty, she would have left them years ago. Two stories in particular stood out to me. In one, Lawless tells her mother that she has a crush on their lawn boy, and the next day, watches as she dons a halter top and short shorts and seduces the lawn boy in a tent in the back yard. The lawn boy is never heard from again. In another, it is her younger sister's high school graduation day. Lawless receives a phone call from the school principal, asking her to "get down to the school right now". When she arrives, her mother has driven her car across the lawn, up to the stage on the football field, and, dressed in her pale blue nightie, she is stumbling about the school grounds. When Lawless arrives, her mother hops in her car, drives off, and isn't heard from for several days, when she arrives back home as though nothing has happened.

Lawless is a smart, funny writer with a wickedly sharp wit. There's the old adage about how you can either laugh or cry, and she's chosen to laugh, and to make us laugh as well. This memoir is horrifyingly sad, but Lawless never allows you to feel sorry for her. She is a survivor, and she has not only survived, but she has thrived.

Review #51: Go Ask Alice, Anonymous

Somehow I made it through my teenage years and young adulthood without ever having read Go Ask Alice. I had heard of it, of course, but it never interested me. So when I came across it in a used bookstore, I figured it was worth the fifty cents.

The story goes that Go Ask Alice is a collection of diary entries from a fifteen year old girl who stumbles down the rabbit hole of drug use. No mention is ever made of a year, although from the description of clothes and "Establishment", one could assume the mid to late sixties. She's never named.

She is portrayed as a good girl and the beginning part of her diary talks about the usual teenage things: clothes, boys, how annoying her parents are, and what it must be like to kiss someone. And then, about fifty pages in, things take a turn. She is given LSD in her Coca Cola at a party, and has a fantastic trip. Instead of being turned off, she wants more, and soon she is dealing. Her efforts to come clean fail, and she eventually runs away.

A couple of stints in rehab, a few tumbles off the wagon, another lost six months, and the girl winds up back home, determined to stay clean, but her old buddies can't leave her alone. She wakes up in what appears to be an asylum. It's never really explained, but the reader is lead to believe that she was intentionally drugged. Shortly after she leaves rehab, she writes that she's leaving her diary behind. A postscript to the book notes that the author of the diary was found dead. It's not known whether it was an accidental or intentional overdose, but then, as the postscript says, it doesn't really matter, because she's still dead.

Go Ask Alice is chilling, without a doubt, but I can't help but wonder (and here's where I'm showing my age), if the kids these days would see it the same way I did.

Review #30: Whip Smart: The True Story of a Secret Life, by Melissa Febos

I picked this up after seeing Alisonrt25's CBR review the other day. I've been drawn to memoirs lately. I'm fascinated by people's lives, their inner secrets, the dark corners of their worlds. Maybe I'm secretly a voyeur. Or maybe I'm just nosy.

Whip Smart is Melissa Febos' account of her time as a dominatrix in a dungeon in New York. She spends her days dressed in leather and latex, whipping stockbrokers and berating attorneys, and her nights looking for her next fix. In between, she attends college at The New School, hides her track marks from her clients, keeps her profession secret from her family, and has a series of nondescript relationships.

Febos' story came roaring out of the gate. I loved her writing, her style, her matter-of-fact way of talking about the gritty underbelly of both sex work and drugs. I was fascinated by how she felt lost and adrift, the push/pull of the drugs, her disgusted fascination with her clients' sexual proclivities. But somewhere along the way I kind of lost interest. Febos became off-putting, selfish, self-indulgent. Even her writing changed; it became more awkward. She referred to things - her parents' divorce, a fairly serious relationship with a man - as though she had talked about them earlier. Her writing became almost condescending and I found myself losing patience with her manufactured (at least to me) angst. I found it increasingly hard to relate to or have compassion for her. This is not a woman who turned to sex work out of need or desperation; this is a woman who chose this line of work and yet bizarrely comes across as looking down on others who made the same choice.

Febos is an excellent and talented author. Today she teaches at SUNY, NYU, and The New School, as well as being involved with other literature projects. I have no nits to pick with her writing. But she rushes the end of the memoir, leaving the dungeon abruptly and rather quickly quitting most of her regular clients. She keeps a couple - the money is too good to turn down - until she finds a man, and then the story is tied up with a neat little happily-ever-after bow that left me unsatisfied.

Review #4: Some Girls: My Life in a Harem, by Jillian Lauren

Some Girls follows the story of Jill Lauren, a young stripper turned escort turned harem girl. The harem to which she belongs is that of one of the brothers of the Sultan of Brunei, a figure that I know intellectually is real, but one that is also a little mythical in this small town girl's mind.

Lauren spends quite a bit of time going back to her childhood, and some of the stories are a little tired: she felt inadequate, she had angst over her adoption, her father was abusive, she played at sex at an early age. In another author's hands, these stories might have been seen as a plea for sympathy, a poor-little-stripper-girl who couldn't help that she turned out this way because her daddy just didn't love her enough. But Lauren recounts her childhood in a very matter-of-fact way, and moves on to the next chapter. I'd be interested to hear what her relationship is like with her family now, in present day.

The story begins as Lauren drops out of high school, getting her GED to be able to move to New York to begin college, an endeavor that lasts less than a month. She winds up stripping while waiting to break in to acting, meets an escort who brings her in to the business, and suddenly finds herself on an airplane, headed for Borneo, headed to become a harem girl.

The politics of the harem are fascinating. There's a pecking order and there's the usual forming - and breaking - of alliances that goes on whenever women compete for a man's riches and affections. Life in the compound is an endless cycle of sleeping late, diet pills, champagne, and late night parties, where the girls dance for the prince while they wait for him to deign to choose them to pleasure him privately. The unchosen ones stumble home at 4am, only to sleep till noon and begin all over again. The chosen ones live the same life; they just stumble home a little bit later.

Lauren's writing is beautiful and spare, and she peppers her stories with just a touch of sarcastic editorial remarks to make you feel like she's your girlfriend dishing about a bad date. I'm disappointed that I can't hang out on her couch and drink a bottle of wine with her.