Brain on Fire
Thank you to Free Press, a publishing house that has become a home to me over the past two years. To the immensely gifted Hilary Redmon, who selected and edited my manuscript: thank you for seeing that special something in my story, loving the science as much as I do, and kneading the story into a narrative. Then there’s the exceptional Millicent Bennett, who through her deft editorial flourishes and probing questions took the book to the next level, making it sing in ways I could never have dreamed. Thank you also to publicists Jill Siegel and Carisa Hays for their belief in the importance of my story and to Chloe Perkins, who put in a lot of late nights making this a better book. Thank you to the whole Free Press team: Suzanne Donahue, Nicole Judge, Paul O’Halloran, Edith Lewis, Beverly Miller, Claire Kelley, Alanna Ramirez, Sydney Tanigawa, Laura Tatham, Kevin McCahill, Brittany Dulac, Kelly Roberts, and Erin Reback. And, finally, to Dominick Anfuso and Martha Levin for putting such faith in me and creating such an amazingly supportive place for writers.
To my dazzling illustrator Morgan Schweitzer: you got it instantly, and your illustrations breathe such life into my work. My appreciation to the virtuosic Meehan Crist, who not only helped me get a grasp on the complexities, but also guided me toward finding my voice.
Thank you to the patient and helpful experts: Dr. Rita Balice-Gordon at the University of Pennsylvania, who has a special knack for explaining abstractions; Dr. Chris Morrison at the New York University Medical Center, who was so crucial to my understanding of the brain’s “glitches”; Dr. Vincent Racaniello at Columbia University, who shared his knowledge of the awesomeness of viruses; Dr. Philip Harvey at the University of Miami, who showed me how my disease fits within the study of schizophrenia; Dr. Robert Lahita at Newark Beth Israel, who spent hours on the phone bantering about phagocytes; Dr. David Linden at Johns Hopkins University, who patiently explained to me the role of NMDA receptors in the brain; Dr. Joel Pachter at the University of Connecticut, who revealed how the blood-brain barrier works; and, finally, Dr. Henry Roediger III at Washington University in St. Louis and Dr. Elizabeth Loftus at the University of Washington, for explaining false-memory research.
I am grateful to the librarians of the library at the New York Academy of Medicine and at the New York Public Library, and to my fellow science writers at Columbia’s NeuWrite group who helped me accurately navigate through the more intricate scientific passages.
To the incredibly brave survivors and families who have so generously made me a part of their lives: Nesrin Shaheen and her daughter Sonia Gramcko; Emily, Bill, and Grace Gavigan; Sandra Reali; Cheryl, Tony, and Jayden Liuzza; Kiera Givens Echols; Angie McGowan; Donna Harris Zulauf; Annalisa Meier and her parents; and so many others.
To Paul McPolin, my straight-shooting Post editor, you are, as I said, a brilliant editor, and your work and generosity show in these pages. To my Post neighbor Maureen Callahan, who spent many nights listening to me babble over martinis: your insights show on these pages as well. And to Angela Montefinise, who told me the book was “great” when it was far from it, who brought me a cheeseburger in the hospital, who rescued my blue-haired stray, Dusty: I am forever in your debt. And thank you to the extraordinary Julie Stapen not only for bringing some needed levity (with her now infamous “poop” picture) but also for spending two hours patiently shooting me in search of the perfect author photo.
Thank you to Katie Strauss for the stuffed rat, Jennifer Arms for the pumpernickel bagel, Lindsey Derrington for visiting me all the way from St. Louis, Colleen Gutwein for those gorgeous pictures of Cambodia, Mackenzie Dawson for her Sartre quote, and Ginger Adams Otis and Zach Haberman for taking care of Dusty when I wasn’t able to.
To the New York Post, and especially the Sunday staff, which has been so supportive during my illness and throughout the writing of this book. The Post’s cast of characters are among my closest friends. Thank you to the following who have helped in one way or another with the writing of this book: Jim Fanelli, Hasani Gittens, Sue Edelman, Liz Pressman, Isabel Vincent, Rob Walsh, and Kirsten Fleming. Thanks to Steve Lynch, who edited the article “My Mysterious Lost Month of Madness,” on which this book is based, and to my first editor, Lauren Ramsby, who taught me the value of asking that extra “why.”
To the friends and family who offered up their valued perspectives: the Goldmans, the Fasanos, Rosemarie Terenzio, Bryan Cirelli, Jay Turon, Sarah Nurre, Frank Fenimore, Kelsey Kiefer, Calle Gartside, David Bernard, Kristy Schwarzman, Beth Starker, and Jeff Vines. And thank you to Preston Browning, who offered me a place to write at his charming Wellspring House, which has become my second home.
And, finally, thank you to the “purple lady,” whose name I still don’t know.
ILLUSTRATION CREDITS
Illustration by Morgan Schweitzer: pages 1, 42, 73, 117, 173, 235, 251
Medical record: pages 75, 90, 92, 119
Illustration by Morgan Schweitzer and Susannah Cahalan: page 132
Images from Dr. Josep Dalmau, University of Pennsylvania, Department of Neurology: page 148
Images from Dr. Souhel Najjar, NYU Medical Center, Departments of Neurology and Neuropathology: page 219
ABOUT THE AUTHOR
AUTHOR PHOTO BY JULIE STAPEN
Susannah Cahalan began her investigative reporting career at the New York Post when she took an internship in her senior year of high school. She has now been there for ten years. Her work has also been featured in the New York Times and the Czech Business Weekly, where she worked when she studied abroad during her junior year of college. She was the recipient of the Silurian Award of Excellence in Journalism for Feature Writing for the article “My Mysterious Lost Month of Madness,” on which this book is based. She lives in Jersey City, New Jersey.
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NOTES
CHAPTER 1: BEDBUG BLUES
1 those suffering from parasitosis: Nancy C. Hinkle, “Delusory Parasitosis,” American Entomologist 46, no. 1 (2000): 17–25, http://www.entuga.edu/pubs/delusory.pdf (accessed August 2, 2011).
2 releasing millions of virus particles: Vincent Racaniello, “Virology 101,” Virology Blog: About Viruses and Diseases, http://www.virology.ws/virology-101/ (accessed March 1, 2011). Robert Kulwich, “Flu Attack! How the Virus Invades Your Body,” NPR.org [blog], October 23, 2009 (accessed March 1, 2011).
CHAPTER 4: THE WRESTLER
3 “I used to try to forget about you”: Robert D. Siegel, The Wrestler, directed by Darren Aronofsky, Fox Searchlight, 2008.
CHAPTER 7: ON THE ROAD AGAIN
4 “That’s nice to have at seven in the morning”: “Basking in Basque Country,” Spain . . . on the Road Again, PBS, New York, original broadcast date October 18, 2008.
CHAPTER 8: OUT-OF-BODY EXPERIENCE
5 complex partial seizures: Epilepsy Foundation, “Temporal Lobe Epilepsy,” Epilepsyfoundation.org, http://www.epilepsyfoundation.org/aboutepilepsy/syndromes/temporallobeepilepsy.cfm (accessed March 1, 2011). Temkin Owsei, The Falling Sickness: A History of Epilepsy from the Greeks to the Beginnings of Modern Neurology (Baltimore: Johns Hopkins University Press, 1971).
6 range from a “Christmas morning”: Alice W. Flaherty, The Midnight Disease: The Drive to Write, Writer’s Block and the Creative Brain (New York: Houghton Mifflin, 2004), 27.
7 religious experiences: Akira Ogata and Taihei Miyakawa, “Religious Experience in Epileptic Patients with Focus on Ictal-Related Episodes,” Psychiatry and Clinical Neurosciences 52 (1998): 321–325, http://onlinelibrary.wiley.com/doi/10.1046/j.1440–1819.1998.00397.x/pdf.
8 A small subset of those with temporal lobe epilepsy: Shahar Arzy, Gregor Thut, Christine Mohr, Christoph M. Michel, and Olaf Blank
e, “Neural Basis of Embodiment: Distinct Contributions of Temporoparietal Junction and Extrastriate Body Area,” Journal of Neuroscience 26 (2006): 8074–8081.
CHAPTER 9: A TOUCH OF MADNESS
9 best places to live in America by Money magazine: CNN Money, “Best Places to Live: 2005,” Money.CNN.com, http://money.cnn.com/magazines/moneymag/bplive/2005/snapshots/30683.html (accessed Thursday, April 12, 2012).
10 “a brain disorder that causes unusual shifts in moods”: National Institutes of Health, “Bipolar Disorder,” NIH.gov, http://www.nimh.nih.gov/health/publications/bipolar-disorder/nimh-bipolar-adults.pdf (accessed March 14, 2009).
11 Jim Carrey, Winston Churchill, Mark Twain, Vivien Leigh, Ludwig van Beethoven, Tim Burton: Bipolar Disorder Today, “Famous People with Bipolar Disorder,” Mental-Health-Today.com,http://www.mental-health-today.com/bp/famous_people.htm (accessed March 14, 2009).
CHAPTER 15: THE CAPGRAS DELUSION
12 her husband had become a “double”: Orin Devinsky, “Delusional Misidentifications and Duplications,” Neurology 72 (2009): 80–87.
13 revealed that Capgras delusions: Jad Abumrad and Robert Krulwich, “Seeing Imposters: When Loved Ones Suddenly Aren’t,” NPR, March 30, 2010, http://www.npr.org/templates/story/story.php?storyId=124745692 (accessed May 4, 2011). V. S. Ramachandran and Sandra Blakeslee, Phantoms in the Brain: Probing the Mysteries of the Human Mind (New York: Morrow, 1998), 161–171.
CHAPTER 16: POSTICTAL FURY
14 twelve hours or as long as three months: Orin Devinsky, “Postictal Psychosis: Common, Dangerous, and Treatable,” Epilepsy Currents, February 26, 2008, 31–34. Kenneth Alper et al., “Premorbid Psychiatric Risk Factors for Postictal Psychosis,” Journal of Neuropsychiatry and Clinical Neuroscience 13 (2001): 492–499. Akira Ogata and Taihei Miyakawa, “Religious Experience in Epileptic Patients with Focus on Ictal-Related Episodes,” Psychiatry and Clinical Neuroscience 52 (1998): 321–325.
15 “postictal fury”: S. J. Logsdail and B. K. Toone, “Post-Ictal Psychoses: A Clinical and Phenomenological Description,” British Journal of Psychiatry 152 (1988): 246–252.
16 A quarter of psychotic people: Michael Trimble, Andy Kanner, and Bettina Schmitz, “Postictal Psychosis,” Epilepsy and Behavior 19 (2010): 159–161.
CHAPTER 17: MULTIPLE PERSONALITY DISORDER
17 I was within the age range for psychotic breaks: The New York Times Health Guide, “Schizophrenia,” Health.nytimes.com, http://health.nytimes.com/health/guides/disease/schizophrenia/risk-factors.html (accessed February 20, 2010).
18 dissociative identity disorder (DID): “Dissociative Identity Disorder,” in American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders—IV (Text Revision) (Washington, D.C.: American Psychiatric Association, 2 000), 526–529.
19 On of a scale from 1 (most dire cases) to 100: “Bipolar Disorder,” in ibid.
CHAPTER 18: BREAKING NEWS
20 “Like a bolt from the blue”: P. A. Pichot, “A Comparison of Different National Concepts of Schizoaffective Psychosis,” in Schizoaffective Psychoses (Berlin: Springer-Verlag, 1986), 8–16. A. Marneros and M. T. Tsuang, “Schizoaffective Questions and Directions,” in Schizoaffective Psychoses (Berlin: Springer-Verlag, 1986).
21 “uninterrupted period of illness during”: American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders—IV (Text Revision) (Washington, D.C.: American Psychiatric Association, 2000), 319–323.
CHAPTER 21: DEATH WITH INTERRUPTIONS
22 In 1933, a bicycle struck seven-year-old Henry Gustav Molaison: Luke Dittrich, “The Brain That Changed Everything,” Esquire.com, October 5, 2010, www.esquire.com/features/henry-molaison-brain-1110 (accessed May 8, 2011). “Histopathological Examination of the Brain of Amnesiac Patient H.M.,” Brain Observatory, August 18, 2010, http://thebrainobservatory.ucsd.edu/content/histopathological-examination-brain-amnesic-patient-hm (accessed May 8, 2011). William Beecher Scoville and Brenda Milner, “Loss of Recent Memory after Bilateral Hippocampal Lesions,” Journal of Neurology, Neurosurgery and Psychiatry 20 (1957): 11–21. Benedict Carey, “H.M., an Unforgettable Amnesiac, Dies at 82,” New York Times, December 5, 2008, http://www.nytimes.com/2008/12/05/us/05hm.html?pagewanted=all (accessed May 8, 2011).
23 “Clive was under the constant impression”: Deborah Wearing, Forever Today: A True Story of Lost Memory and Never-Ending Love (London: Corgi, 2006).
24 “I haven’t heard anything”: Oliver Sacks, “The Abyss: Music and Amnesia,” New Yorker, September 24, 2007, http://www.newyorker.com/reporting/2007/09/24/070924fa_fact_sacks (accessed September 13, 2011).
CHAPTER 22: A BEAUTIFUL MESS
25 At the top of the spinal cord and at the underside of the brain: 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). Stephen G. Waxman, Clinical Neuroanatomy, Twenty-Sixth Edition (New York: McGraw Hill, 2010).
26 “The brain is a monstrous, beautiful mess”: William F. Allman, Apprentices of Wonder: Inside the Neural Network Revolution (New York: Bantam, 1989), 3.
CHAPTER 24: IVIG
27 IVIG is made up of serum antibodies: Falk Nimmerjahn and Jeffrey V. Ravetch, “The Anti-Inflammatory Activity of IgG: The Intravenous IgG Paradox,” Journal of Experimental Medicine 204 (2007): 11–15. Arturo Casadevall, Ekaterina Dadachova, and Liise-Anne Pirofski, “Passive Antibody Therapy for Infectious Diseases,” Nature Reviews Microbiology 2 (2004): 695–703. Noah S. Scheinfeld, “Intravenous Immunoglobulin,” Medscape Reference, http://emedicine.medscape.com/article/210367-overview (accessed May 8, 2011).
28 Antibodies are created by the body’s immune system: John M. Dwyer, The Body at War: The Story of Our Immune System (Sydney, Australia: Allen & Unwin, 1994), 28–52. S. Jane Flint, Lynn W. Enquist, Vincent R. Racaniello, and A. M. Skalka, Principles of Virology: Molecular Biology, Pathogenesis, and Control of Animal Viruses, Third Edition (Washington, D.C.: American Society of Microbiology, 2009), 86–130. Noel R. Rose and Ian R. Mackay, eds., The Autoimmune Diseases, Fourth Edition (St. Louis, Mo.: Elsevier, 2006). Lauren Sompayrac, How the Immune System Works, Third Edition (Oxford: Blackwell, 2008). Massoud Mahmoudi, Immunology Made Ridiculously Simple (Miami: Med Master, 2009). Robert G. Lahita, Women and Autoimmune Disease: The Mysterious Ways Your Body Betrays Itself (New York: Morrow, 2004).
29 ten days versus the innate system’s minutes or hours: Vincent Racaniello, “Innate Immune Defenses,” Virology.ws, http://www.virology.ws/2009/06/03/innate-immune-defenses (accessed March 11, 2010). Vincent Racaniello, “Adaptive Immune Defenses,” Virology.ws, http://www.virology.ws/2009/07/03/adaptive-immune-defenses (accessed March 11, 2010).
30 collateral damage of these internal battles: Lauren Sompayrac, How the Immune System Works, Third Edition (Oxford: Blackwell, 2008). Massoud Mahmoudi, Immunology Made Ridiculously Simple (Miami: Med Master, 2009). Robert G. Lahita, Women and Autoimmune Disease: The Mysterious Ways Your Body Betrays Itself (New York: Morrow, 2004).
31 plasma cells that create antibodies: John M. Dwyer, The Body at War: The Story of Our Immune System (Sydney, Australia: Allen & Unwin, 1994), 28–52. S. Jane Flint, Lynn W. Enquist, Vincent R. Racaniello, and A. M. Skalka, Principles of Virology: Molecular Biology, Pathogenesis, and Control of Animal Viruses, Third Edition (Washington, D.C.: American Society of Microbiology, 2009), 86–130. Noel R. Rose and Ian R. Mackay, eds., The Autoimmune Diseases: Fourth Edition (St. Louis: Elsevier, 2006). Lauren Sompayrac, How the Immune System Works, Third Edition (Oxford: Blackwell, 2008). Massoud Mahmoudi, Immunology Made Ridiculously Simple (Miami: Med Master, 2009). Robert G. Lahita, Women and Autoimmune Disease: The Mysterious Ways Your Body Betrays Itself (New York: Morrow, 2004).
32 WIRED ’N MIRED: Brendan T. Carroll, Christopher Thomas, Kameshwari Jayanti, John M. Hawkins, and Carrie Burbage, “Treating Persistent Catatonia When Benzodiazepines Fail,” Curre
nt Psychiatry 4 (2005): 59.
CHAPTER 26: THE CLOCK
33 Although developed in the mid-1950s: Janus Kremer, “Clock Drawing in Dementia: A Critical Review,” Revista Neurologica Argentina 27 (2002): 223–227.
34 The healthy brain enables vision: Francesco Pavani, Elisabetta Ladavas, and Jon Driver, “Auditory and Multisensory Aspects of Visuospatial Neglect,” Trends in Cognitive Sciences 7 (2008): 407–414. V. S. Ramachandran and Sandra Blakeslee, Phantoms in the Brain: Probing the Mysteries of the Human Mind (New York: Morrow, 1998), 115–125. V. S. Ramachandran, The Tell-Tale Brain: A Neuroscientist’s Quest for What Makes Us Human (New York: Norton, 2011), 1–21. 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). Stephen G. Waxman, Clinical Neuroanatomy, Twenty-Sixth Edition (New York: McGraw-Hill, 2010).