41 This second article identified twelve women: Josep Dalmau et al., “Paraneoplastic Anti-N-Methyl-D-Aspartate Receptor Encephalitis Associated with Ovarian Teratoma,” Annals of Neurology 61 (2007): 25–36.
CHAPTER 31: THE BIG REVEAL
42 For 70 percent of patients, the disorder begins innocuously, with normal flulike symptoms: Josep Dalmau et al., “Clinical Experience and Laboratory Investigations in Patients with Anti-NMDAR Encephalitis,” Lancet Neurology 10 (2011): 63–74.
43 75 percent of patients recover fully or maintain only mild side effects: Josep Dalmau et al., “Clinical Experience and Laboratory Investigations in Patients with Anti-NMDAR Encephalitis,” Lancet Neurology 10 (2011): 63–74.
44 late 1800s, a German doctor christened it “teratoma”: Elizabeth Svoboda, “Monster Tumors Show Scientific Potential in War against Cancer,” New York Times, June 6, 2006, http://www.nytimes.com/2006/06/06/health/06tera.html (accessed May 1, 2011).
CHAPTER 33: HOMECOMING
45 stages of recovery often occur in reverse order: Josep Dalmau et al., “Clinical Experience and Laboratory Investigations in Patients with Anti-NMDAR Encephalitis,” Lancet Neurology 10 (2011): 63–74.
CHAPTER 34: CALIFORNIA DREAMIN’
46 Swedish dairy cream separator created in the late 1800s: T. J. Hamblin, “Apheresis Therapy: Spin-Drying the Blood,” British Medical Journal 285 (1982): 1136–1137. Dianne M. Cearlock and David Gerteisen, “Therapeutic Plasmapheresis for Autoimmune Diseases: Advances and Outcomes,” Medical Laboratory Observer, November 2010, http://www.mlo-online.com/articles/nov00.pdf (accessed May 2011).
CHAPTER 39: WITHIN NORMAL LIMITS
47 Often those with neurological issues cannot readily identify: Rhawn Joseph, Neuropsychiatry, Neuropsychology, Clinical Neuroscience (Orlando, Fla.: Academic Press, 2000), http://brainmind.com/Agnosia.html.
CHAPTER 40: UMBRELLA
48 frontal lobes are largely responsible for complex executive functions: Michael O’Shea, The Brain: A Very Short Introduction (Oxford: Oxford University Press, 2005). Rita Carter, Susan Aldridge, Martyn Page, and Steve Parker, The Human Brain Book (London: DK Adult, 2009).
49 “ice pick” lobotomy: “My Lobotomy: Henry Dully’s Journey,” All Things Considered, NPR.org, November 16, 2005, http://www.npr.org/templates/story/story.php?storyId=5014080 (accessed May 13, 2011). Shanna Freeman, “How Lobotomies Work,” HowStuffWorks.com, http://science.howstuffworks.com/environmental/life/human-biology/lobotomy3.htm (accessed May 13, 2011).
CHAPTER 43: NDMA
50 New York Times Magazine “Diagnosis” column: Lisa Sanders, “Diagnosis: Brain Drain,” New York Times Magazine, November 9, 2008, http://query.nytimes.com/gst/fullpage.html?res=9C05E7DA1F3BF93AA35752C1A96E9C8B63.
CHAPTER 47: THE EXORCIST
51 Dr. Guillaume Sébire noticed an unusual pattern: Guillaume Sébire et al., “Coma Associated with Intense Bursts of Abnormal Movements and Long-Lasting Cognitive Disturbances: An Acute Encephalopathy of Obscure Origin,” Journal of Pediatrics 121 (1992): 845–851.
52 1981 by Robert Delong and colleagues, described: Robert G. Delong et al., “Acquired Reversible Autistic Syndrome in Acute Encephalopathic Illness in Children,” Child Neurology 38 (1981): 191–194.
53 40 percent of patients diagnosed with this disease are children: Josep Dalmau et al., “Clinical Experience and Laboratory Investigations in Patients with Anti-NMDAR Encephalitis,” Lancet Neurology 10 (2011): 63–74.
54 thirteen-year-old girl from Tennessee displayed: Emily Bregel, “Chattanooga: Teen Has ‘Miraculous’ Recovery from an Unusual Tumor Disorder,” TimesFreePress.com, June 11, 2009, http://timesfreepress.com/news/2009/jun/11/chattanooga-teen-has-miraculous-recovery-unusual-t/?local.
55 what is known as echolalia: Guillaume Sébire, “In Search of Lost Time: From Demonic Possession to Anti-NMDAR Encephalitis,” Annals of Neurology 66 (2009): 11–8. Nicole R. Florance and Josep Dalmau, “Reply to: In Search of Lost Time: From ‘Demonic Possession to Anti-NMDAR Encephalitis,’” Annals of Neurology 67 (2010): 142–143.
56 a nineteen-year-old woman: Souhel Najjar, D. Pearlman, D. Zagzag, J. Golfinos, and O. Devinsky, “Glutamic Acid Decarboxylase Autoantibody Syndrome Presenting as Schizophrenia,” Neurologist 18 (2012): 88–91.
57 the rate of misdiagnoses: David Leonhardt, “Why Doctors So Often Get It Wrong,” New York Times, February 22, 2006, http://www.nytimes.com/2006/02/22/business/22leonhardt.html.
CHAPTER 48: SURVIVOR’S GUILT
58 one hundred different kinds of autoimmune diseases: American Autoimmune Related Diseases Association and National Coalition of Autoimmune Patient Groups, “The Cost Burden of Autoimmune Disease: The Latest Front in the War on Healthcare Spending” (Eastpointe, Mich.: American Autoimmune Related Diseases Association, 2011). Autoimmune Diseases Coordinating Committee, “Autoimmune Diseases Research” (Bethesda, Md.: National Institutes of Health, March 2005).
59 20 to 30 percent of survivors develop it: Gwen Adshead, “Psychological Therapies for Post-Traumatic Stress Disorder,” British Journal of Psychiatry 177 (2000): 144–148.
CHAPTER 50: ECSTATIC
60 relapses happen in about 20 percent of cases: Josep Dalmau et al., “Clinical Experience and Laboratory Investigations in Patients with Anti-NMDAR Encephalitis,” Lancet Neurology 10 (2011): 63–74.
CHAPTER 51: FLIGHT RISK?
61 In 2010, a Cambridge University study: Hannah L. Morgan, Danielle C. Turner, Philip R. Corlett, Anthony R. Absalom, Ram Adapa, Fernando S. Arana, Jennifer Pigott, Jenny Gardner, Jessica Everitt, Patrick Haggard, and Paul C. Fletcher, “Exploring the Impact of Ketamine on the Experience of Illusory Body Ownership,” Biological Psychiatry 69, no. 1 (2011): 35–41.
62 self-monitoring theory: Sharon Begley, “The Schizophrenic Mind,” Newsweek, March 11, 2002, www.newsweek.com/2002/03/10/the-schizophrenic-mind.print.html (accessed April 21, 2011). Dominic H. Ffytche, “The Hodology of a Hallucinations,” Cortex 44 (2008): 1067–1083.
63 generation effect: Philip D. Harvey et al., “Cortical and Subcortical Cognitive Deficits in Schizophrenia: Convergence of Classifications Based on Language and Memory Skill Areas,” Journal of Clinical and Experimental Neuropsychology 24 (2002): 55–66. Carol A. Tamminga, Ana D. Stan, and Anthony D. Wagner, “The Hippocampal Formation in Schizophrenia,” American Journal of Psychiatry 167 (2010): 1178–1193. Daphna Shohamy, Perry Mihalakos, Ronald Chin, Binu Thomas, Anthony D. Wagner, and Carol Tamminga, “Learning and Generalization in Schizophrenia: Effects of Disease and Antipsychotic Drug Treatment,” Biological Psychiatry 67 (2010): 926–932.
64 amygdala, an almond-shaped structure situated atop the hippocampus: Michael O’Shea, The Brain: A Very Short Introduction (Oxford: Oxford University Press, 2005). Rita Carter, Susan Aldridge, Martyn Page, and Steve Parker, The Human Brain Book (London: DK Adult, 2009). Elizabeth A. Phelps and Tali Sharot, “How (and Why) Emotion Enhances Subjective Sense of Recollection,” Current Directions in Psychological Sciences 17 (2008): 147–152, http://www.psych.nyu.edu/phelpslab/papers/08_CDPS_V17No2_147.pdf. Joseph E. LeDoux, “Emotion Circuits in the Brain,” Annual Reviews of Neuroscience 23 (2000): 155–185.
65 help encode and consolidate: Jesse Rissman and Anthony D. Wagner, “Distributed Representations in Memory: Insights from Functional Brain Imaging,” Annual Review of Psychology 63 (2012): 101–128. Richard C. Mohs, “How Human Memory Works,” HowStuffWorks.com, http://science.howstuffworks.com/environmental/life/human-biology/human-memory.htm.
66 Dr. Loftus has spent a lifetime: William Saletan, “The Memory Doctor: The Future of False Memories,” Slate.com, June 4, 2010, http://www.slate.com/articles/health_and_science/the_memory_doctor/2010/06/the_memory_doctor.single.html.
67 A team of New York–based neuroscientists in 2000 demonstrated this assumption in lab rats: Greg Miller, “How Our Brains Make Memories,” Smithsonian, May 2010, http://www.smithsonianmag.com/science-nature/How-Our-Brains-Make-Memories.html. “Big Think Interview
with Joseph LeDoux,” BigThink.com, June 9, 2010, http://bigthink.com/josephledoux.
We hope you enjoyed reading this Free Press eBook.
Review
“The bizarre and confounding illness that beset the 24-year-old New York Post reporter in early 2009 so ravaged her mentally and physically that she became unrecognizable to coworkers, family, friends, and—most devastatingly—herself… She dedicates this miracle of a book to ‘those without a diagnosis’… [An] unforgettable memoir.”
Elle
“Swift and haunting.”
Scientific American
“This fascinating memoir by a young New York Post reporter… describes how she crossed the line between sanity and insanity… Cahalan expertly weaves together her own story and relevant scientific information… compelling.”
Booklist (starred review)
“Compelling… a New York Post reporter recounts her medical nightmare.”
Mental Floss
“For the neurologist, I highly recommend this book on several grounds…First, it is a well-told story, worth reading for the suspense and the dramatic cadence of events…Second, it is a superb case study of a rare neurologic diagnosis; even experienced neurologists will find much to learn in it…Third, and most important, it gives the neurologist insight into how a patient and her family experienced a complex illness, including the terrifying symptoms, the difficult pace of medical diagnosis, and the slow recovery. This story clearly contains lessons for all of us.”
Cognitive and Behavioral Neurology
“Focusing her journalistic toolbox on her story, Cahalan untangles the medical mystery surrounding her condition… A fast-paced and well-researched trek through a medical mystery to a hard-won recovery.”
Publishers Weekly
It’s a cold March night in New York, and journalist Susannah Cahalan is watching PBS with her boyfriend, trying to relax after a difficult day at work. He falls asleep, and wakes up moments later to find her having a seizure straight out of The Exorcist. “My arms suddenly whipped straight out in front of me, like a mummy, as my eyes rolled back and my body stiffened,” Cahalan writes. “I inhaled repeatedly, with no exhale. Blood and foam began to spurt out of my mouth through clenched teeth.”
It’s hard to imagine a scenario more nightmarish, but for Cahalan the worst was yet to come. In 2009, the New York Post reporter, then 24, was hospitalized after—there’s really no other way to put it — losing her mind. In addition to the violent seizures, she was wracked by terrifying hallucinations, intense mood swings, insomnia and fierce paranoia. Cahalan spent a month in the hospital, barely recognizable to her friends and family, before doctors diagnosed her with a rare autoimmune disorder. “Her brain is on fire,” one doctor tells her family. “Her brain is under attack by her own body.”
Cahalan, who has since recovered, remembers almost nothing about her monthlong hospitalization—it’s a merciful kind of amnesia that most people, faced with the same illness, would embrace. But the best reporters never stop asking questions, and Cahalan is no exception. In Brain on Fire, the journalist reconstructs—through hospital security videotapes and interviews with her friends, family and the doctors who finally managed to save her life—her hellish experience as a victim of anti-NMDA receptor encephalitis. The result is a kind of anti-memoir, an out-of-body personal account of a young woman’s fight to survive one of the cruelest diseases imaginable. And on every level, it’s remarkable.
The best journalists prize distance and objectivity, so it’s not surprising that the most difficult subject for a news writer is probably herself. And although she’s young, Cahalan belongs firmly to the old school of reporters—she writes with an incredible sense of toughness and a dogged refusal to stop digging into her past, even when it profoundly hurts. One of the most moving moments in Brain on Fire comes when Cahalan, preparing a New York Post article about her illness, watches videos of herself in the hospital. She’s horrified, but finds that she can’t look away. “I was outrageously skinny. Crazed. Angry,” she writes. “I had the intense urge to grab the videos and burn them or at least hide them away, safe from view.”
But she doesn’t, and she barely flinches when her loved ones tell her about the paranoid delusions that held her firmly in their grasp for several weeks. There’s no vanity in Brain on Fire—Cahalan recounts obsessively searching her boyfriend’s email for signs that he was cheating on her (he wasn’t) and loudly insisting to hospital workers that her father had killed his wife (she was alive). Cahalan is nothing if not tenacious, and she perfectly tempers her brutal honesty with compassion and something like vulnerability.
It’s indisputable that Cahalan is a gifted reporter, and Brain on Fire is a stunningly brave book. But even more than that, she’s a naturally talented prose stylist—whip-smart but always unpretentious—and it’s nearly impossible to stop reading her, even in the book’s most painful passages. Reflecting on finding a piece of jewelry she’d lost during her illness, she writes, “Sometimes, just when we need them, life wraps metaphors up in little bows for us. When you think all is lost, the things you need the most return unexpectedly.”
Brain on Fire comes from a place of intense pain and unthinkable isolation, but finds redemption in Cahalan’s unflagging, defiant toughness. It’s an unexpected gift of a book from one of America’s most courageous young journalists.
NPR.org
“Engrossing… Unquestionably, an important book on both a human and a medical level. Cahalan’s elegantly-written memoir of her dramatic descent into madness opens up discussion of the cutting-edge neuroscience behind a disease that may affect thousands of people around the world, and it offers powerful insight into the subjective workings of our minds.”
—Mehmet Oz, M.D., Professor and Vice Chair, Department of Surgery, New York Presbyterian-Columbia Medical Center (Mehmet Oz, M.D.)
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Copyright © 2012 by Susannah Cahalan
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Library of Congress Cataloging-in-Publication Data
Cahalan, Susannah.
Brain on fire: my month of madness / Susannah Cahalan.
p. cm.
1. Cahalan, Susannah—Health. 2. Cahalan, Susannah—Mental health. 3. Encephalitis—Patients—United States—Biography. 4. Autoimmune diseases—Patients—United States—Biography. 5. Frontal lobes—Diseases—Patients—United States—Biography. 6. Limbic system—Diseases—Patients—United States—Biography. 7. Diagnostic errors—United States—Case studies. I. Title.
RC390.C24 2012
616.8’320092—dc23 2012012670
ISBN 978-
1-4516-2137-2
ISBN 978-1-4516-2139-6 (ebook)
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