Reviews - Riverside Public Library

Booklist Reviews

*Starred Review* In this fascinating memoir by a young New York Post reporter previously known for going undercover as a stripper and writing a butt-implant story headlined Rear and Present Danger, Cahalan describes how she crossed the line between sanity and insanity after an unknown pathogen invaded her body and caused an autoimmune reaction that jump-started brain inflammation, paranoia, and seizures. Her divorced parents put aside their differences and rose to the occasion, sitting by her during the month she was confined to the hospital, about which she remembers nothing. Her boyfriend stayed with her, and one wonderful doctor, noticing that she walked and talked like a late-stage Alzheimer's patient, was determined to get to the bottom of her medical mystery. Luckily, she was insured, because her treatment cost $1 million. Cahalan expertly weaves together her own story and relevant scientific and medical information about autoimmune diseases, which are about two-thirds environmental and one-third genetic in origin. So, she writes, an external trigger, such as a sneeze or a toxic apartment, probably combined with a genetic predisposition toward developing aggressive antibodies to create her problem. A compelling health story. Copyright 2012 Booklist Reviews.

BookPage Reviews

A million-dollar medical mystery

She thought she had mono. Then she decided she was bipolar. To her disgust, a famed New York City neurologist told her that she simply worked too hard and drank too much.

Susannah Cahalan's mix of Google-search self-diagnosis and hit-and-miss expert opinion might have been comical if her situation hadn't been so dire. At the age of 24, Cahalan, a reporter for the New York Post, began feeling less and less herself, then had a seizure, and then ended up in the hospital for a month, out of her mind for most of that time, while a small army of doctors and medical researchers tried to figure out what was wrong with her.

"It was one of those things that wasn't completely obvious at first," Cahalan says, remembering the onset of her mystifying disease during a call to the apartment in Jersey City she shares with her boyfriend Stephen, one of the heroes of Brain on Fire: My Month of Madness, her book about this harrowing experience. "Maybe if I had been working a more stable or less exciting job, I would have been more aware of what was going on. But because I was working at the New York Post and there are so many highs and lows to journalism, I wasn't aware of the fluctuations."

Stephen (her boyfriend of just six months at the time and a colleague at the Post, where she had begun working as a "copy kid" at 17) and her estranged parents, however, had become increasingly alarmed by her behavior just before her seizure. Later they would all become key informants as Cahalan tried to piece together what had happened to her during her month of madness.

"It's so hard for me to get to that person again," Cahalan says. "I did a lot of yoga trying to access these hallucinations and these lost memories. . . . I wrote by hand, which I thought would maybe help me better access these things. I do remember things, but I don't know if it's because I've spent so much time writing about them that I've created these memories."

"People who don't have a diagnosis have to be their own advocates. It's important to question medical authority."

So Cahalan's efforts to write Brain on Fire became an attempt both to reconstruct how she became the crazy person she briefly was and to understand the science that led eventually to a successful diagnosis. Early drafts of the book, Cahalan says, were very "science-y." The published book tends—reluctantly, she says—more toward memoir. Readers will likely find it a swift read, an intriguing mix of scientific detection and personal story. Cahalan includes excerpts from her medical records, from videos of her bizarre behavior in the hospital, and from her follow-up interviews with the two doctors at the University of Pennsylvania—Dr. Souhel Najjar and Dr. Josep Dalmau—who cracked her case.

Diagnosing her illness required a battery of sometimes redundant tests including CAT scans, blood tests, MRIs and a gruesome-sounding brain biopsy. Eventually, Cahalan became only the 217th person to be diagnosed with anti-NMDA receptor autoimmune encephalitis, a rare form of autoimmune disease.

Cahalan says one of her hopes is that Brain on Fire will in some measure help people with undiagnosed conditions and raise awareness about autoimmune diseases. "The brain gets all the attention," she says. "But when I was researching the science for the book, I realized we are just at the beginning of understanding how important the immune system is. Autoimmune disease is an amazing, emerging field of study. Right now 50 million people in the United States have an autoimmune disease. They're especially common in women, which is a mystery. The research that's being done now is basically blurring the lines between immunology, neurology and psychiatry. It's very exciting."

Treatment for Cahalan's disease was considered experimental at the time. It involved a regimen of nearly 20 intravenous immunoglobulin (IVIG) injections at $20,000 a pop. The total cost of her hospitalization and treatment? Something to the north of $1 million, she says.

In the final section of Brain on Fire, the section Cahalan found most challenging to write, she describes her long recovery and reflects on the physical and emotional challenges she faced after she left the hospital. On the plus side, she has grown closer to her father, who was distant from her after her parents' bitter divorce. For the length of time she was in the hospital, her parents united to become her chief advocates. "People who don't have a diagnosis have to be their own advocates. It's important to question medical authority. I couldn't be my own advocate in the hospital because I couldn't be there for myself. But my parents were."

Cahalan's boyfriend Stephen was her "rock in the hospital. The fact that he came every day when we'd only been dating about six months was amazing." But trouble loomed when she came home to recover. "I was dead set on moving ahead. I was getting better. I was back at the Post. Everything seemed fine, but he knew I still wasn't 100 percent. It was a scary experience for him. I think it changed him and he became a different person. Now it's been three and a half years since I was in the hospital and we've worked that out."

Still, the question of how fully she has recovered remains. When her doctors finally reached the correct diagnosis, they told her that treatment would bring her back to about 90 percent of normal.

"It's hard for me to say if I'm 100 percent recovered," Cahalan says. "I know I'm different from the person I was before and I know that has something to do with my illness because it was a huge life experience that I think about every day. But I was 24 then, I'm 27 now. I don't know how much of my change is due to getting older and being in different life circumstances and how much of it has to do with surviving this illness."

Kirkus Reviews

A young journalist's descent into her own baffling medical mystery. In her debut memoir, New York Post reporter Cahalan recounts her struggle to understand an unremembered month lost to illness. Cobbled together from interviews, medical records, notebooks, journals and video footage, the author conjures the traumatic memories of her harrowing ordeal. What began as numbness in her hands and feet soon grew into something more serious, climaxing in a terrifying seizure witnessed by her boyfriend. "My arms suddenly whipped straight out in front of me, like a mummy," she writes, "as my eyes rolled back and my body stiffened….Blood and foam began to spurt out of my mouth through clenched teeth." The mystery thickened as doctors struggled to agree on a diagnosis. While the uncertainty proved maddening for her family members, however, it was also what bonded them together. Cahalan's estranged parents, in particular, found a common purpose as a result of their daughter's plight, putting her health before old hardships. After numerous tests revealed nothing, an observed increase of white blood cells in her cerebrospinal fluid eventually clued in medical professionals. Diagnosed with anti-NMDA-receptor encephalitis--a rare autoimmune disease with a cure--Cahalan and her family embarked on the long, hard road to recovery. Through the lonesomeness of her illness, a community emerged, the members of which were dedicated to returning the author to her former life as a beloved daughter, sister, lover and friend. A valiant attempt to recount a mostly forgotten experience, though the many questions that remain may prove frustrating to some readers. Copyright Kirkus 2012 Kirkus/BPI Communications.All rights reserved.

Library Journal Reviews

New York Post reporter Cahalan details the madness that briefly robbed her of her independence and ability to write. At first, the author's erratic behavior seemed symptomatic of overwork. Soon, her lack of physical control and frightening, self-destructive behavior became impossible to ignore. Following a string of misdiagnoses, a top neurologist recognized a then newly discovered autoimmune condition called anti-NMDA-receptor encephalitis. With the help of her doctor and supportive family and boyfriend, Cahalan recovered and was back at work within a year. Though more journalistic in tone, the book parallels Sylvia Plath's literary classic The Bell Jar. VERDICT A compelling, quick read with a moving message. Cahalan's hip writing style, sympathetic characters, and suspenseful story will appeal to fans of medical thrillers and the television show House. Brief, informative biology and abnormal psychology discussions throughout the text will interest science students without slowing the narrative. Because Cahalan's condition is rare and its causes unknown, this book may save lives and promote empathy for those struggling with mental illness. [See Prepub Alert, 5/20/12.]—Chrissy Spallone, Philadelphia Yearly Meeting Lib.

Library Journal Reviews

At age 24, New York Post reporter Cahalan was successfully launching a career and a first serious relationship when she entered a month of intensive violent and psychotic episodes that she does not remember even now. After $1 million worth of tests, the doctors were preparing to place her in a psychiatric ward when Dr. Souhel Najjar joined her team and diagnosed a newly discovered autoimmune disease in which the body attacks the brain. Cahalan's doctors now think that this disease may explain instances of presumed demonic possession throughout history. Meanwhile, herself again, Cahalan nervily reports this extraordinary experience. A big BEA buzz book.

Library Journal Reviews

Migraines, nausea, numbness, panic attacks, vertigo, depression, ennui. Yes, that's me before my first cup of coffee, but for Cahalan these symptoms started her descent into a very real hell on earth. Before her eventual hospital stint, a 25 day ordeal finally broken with a confirmed diagnosis, people just thought she was going batshit. As the symptoms worsened, it became like a very personal, wrenching, destructive, awful episode of House. Diagnoses varied; Capgras syndrome, Bipolar disorder, Postictal fury, multiple personality disorder, psychosis. Using lots and lots (and lots) of medicine, doctors rule out Lyme disease, Toxoplasmosis, Cryptococcus, TB, lupus, MS, and lymphoreticulosis. Nothing helped for the long-term; seizures, hallucinations, and episodic madness soon derailed the lives of Cahalan and her family. "No one wants to think of herself as a monster," she writes, but guess what? Harrowingly, Cahalan loses all "glimmers of the reliable ‘I,' the Susannah I had been for the previous twenty-four years," and is soon operating with "no rational consciousness…." Turns out she was "only the 217th person worldwide to be diagnosed since 2007," with anti-NMDA-receptor autoimmune encephalitis, a.k.a. Dalmau's disease. IMHO, it's pretty amazing that the doctors even got that far—this is the type of behavior that made folks execute witches. Cahalan is a gifted journalist and provides immense reading satisfaction by keeping the narrative moving and answering questions as they arise. She's also unafraid to paint herself in a weird, piteous light. And FYI, Ms. C., your new haircut looks really good. [LJ 11/1/12.—Ed.] (c) Copyright 2011. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.

Publishers Weekly Reviews

In 2009, Cahalan was in a serious relationship and her career as a reporter at the New York Post was taking off. But suddenly, as she tells it in this engaging memoir, she began suffering from a bizarre amalgam of debilitating symptoms including memory loss, paranoia, and severe psychosis that left her in a catatonic state that moved her close to death. Physicians remained baffled until one extraordinary doctor determined that Cahalan was "in the grip of some kind of autoimmune disease." Released from the hospital after 28 days, she had no memory of her stay there. DVDs recorded in the hospital were the only link she had to her startling condition. "Without this electronic evidence, I could never have imagined myself capable of such madness and misery," she writes. Focusing her journalistic toolbox on her story, Cahalan untangles the medical mystery surrounding her condition. She is dogged by one question: "How many other people throughout history suffered from my disease and others like it but went untreated? The question is made more pressing by the knowledge that even though the disease was discovered in 2007, some doctors I spoke to believe that it's been around at least as long as humanity has." A fast-paced and well-researched trek through a medical mystery to a hard-won recovery. (Nov.)