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Neurology or psychiatry—it's all in your head!
In Context
Neurology or psychiatry—it’s all in your head!
This is a familiar conflict between our reliance on diagnostic tests, and the tension with the narrative of a patient or family. This is unfortunately where so many survivors of anti-NMDA receptor encephalitis have found themselves in the last decade, and most likely long before the groundbreaking work of Josep Dalmau and colleagues published in 2007. Brain on Fire is the eagerly anticipated film based on the bestselling memoir of the same title by New York Post journalist Susannah Cahalan. It is the story of Susannah’s “month of madness” (the strapline to her book) following her decline and approach to a catatonic state due to anti-NMDA receptor encephalitis. Like so many patients with this condition, Susannah is increasingly unwell over several weeks, until a defining moment when she has a seizure and it is clear there is something very wrong. Despite this, she is told by one nurse that it is “all in your head”, and by a doctor that she has simply been “partying too hard”. Her family are at one point informed she has alcohol withdrawal symptoms, despite describing what could arguably be considered acceptable levels of drinking. The film certainly captures the often long, slow onset of anti-NMDA receptor encephalitis, and Susannah is finally taken into hospital at her family’s insistence. Brain on Fire was filmed by director Gerard Barrett over an 18 day shoot, and Chloe Grace Moretz plays Susannah Cahalan. The film uses real-life footage from Susannah in her hospital bed and beautifully captures her strength, her blossoming romance with Stephen (her now husband), and the tenacity of the doctor who finally diagnoses her—Souhel Najjar. Chloe Grace Moretz not only looks remarkably like Susannah, but she also provides a convincing performance, really capturing Susannah’s despair and distress at her deteriorating health. There is a scene where Susannah looks into a mirror and a faded reflection appears—a metaphor illustrating how much Susannah feels her “sense of self” is disappearing—an oftquoted comment by many survivors of encephalitis. There is a strong supporting cast which includes Richard Armitage and Carrie-Anne Moss as Susannah’s parents. There are some elements of the film that might disappoint—an over emphasis on coughing at one point, which felt as if the director struggled with portraying an illness that is often not beset with clear physical indicators early on. Likewise, it seems at times as if the strapline of the book “my month of madness” took the film on an overly psychiatric (in particular bipolar) route. Of course it is not unheard of for these patients to enter psychiatric pathways, and so in this sense the film is reflective of the broader experience for many patients. However, our understanding www.thelancet.com/neurology Vol 16 February 2017
at The Encephalitis Society is that many people’s overwhelming experience is one of a lack of diagnosis as much as the potential for misdiagnosis. Additionally, it must be hoped, that as much as the film might provide a light-bulb moment for some, it is equally hoped it does not provide a false sense of optimism among those who have a confirmed psychological or psychiatric condition. Unfortunately, the film brushes over the medical interventions required in the diagnosis of this often elusive condition and also perhaps the amount of work the hero of the hour, Souhel Najjar, would have done to secure the diagnosis. The clock scene from the book, made infamous subsequently by featuring in the series Hannibal, that helped diagnose Susannah, is reinforced as the primary tool used to really get to grips with understanding this complex condition. There is a quietly unsung second hero in this film—The New York Post. Their tolerance of Susannah’s increasingly unusual behaviour, their support of her through her illness, and their facilitation of her return to work is not everyone’s experience with their employer following ill health and disability. Brain on Fire is the most important film to be made about encephalitis since Awakenings, which described the work of the late Oliver Sacks and the survivors of encephalitis lethargica in the 1960s. Whatever the response to this film, one thing is sure, that its release will validate the experiences of many patients, and support the work of those of us who are trying so hard to raise awareness of a condition that few will have heard of until it strikes their family. We need more Dr Najjar’s—as Susannah says at the end “In a system that is designed to miss people like me, Dr Najjar found me”.
Brain on Fire Directed by Gerard Barrett, 2016. 95 mins. Premiered at the Toronto Film Festival, Sept 16, 2016 For more on The Encephalitis Society see http://www. encephalitis.info For more on the work of Dalmau and colleagues see Ann Neurol 2007; 61: 25–36
Ava Easton, Phillippa Chapman, on behalf of The Encephalitis Society
Foundation Features
“She’s dying in there!” implores her father. “The tests are not saying she’s dying”, replies the doctor.
111
Neurology or psychiatry—it’s all in your head!
This is a familiar conflict between our reliance on diagnostic tests, and the tension with the narrative of a patient or family. This is unfortunately where so many survivors of anti-NMDA receptor encephalitis have found themselves in the last decade, and most likely long before the groundbreaking work of Josep Dalmau and colleagues published in 2007. Brain on Fire is the eagerly anticipated film based on the bestselling memoir of the same title by New York Post journalist Susannah Cahalan. It is the story of Susannah’s “month of madness” (the strapline to her book) following her decline and approach to a catatonic state due to anti-NMDA receptor encephalitis. Like so many patients with this condition, Susannah is increasingly unwell over several weeks, until a defining moment when she has a seizure and it is clear there is something very wrong. Despite this, she is told by one nurse that it is “all in your head”, and by a doctor that she has simply been “partying too hard”. Her family are at one point informed she has alcohol withdrawal symptoms, despite describing what could arguably be considered acceptable levels of drinking. The film certainly captures the often long, slow onset of anti-NMDA receptor encephalitis, and Susannah is finally taken into hospital at her family’s insistence. Brain on Fire was filmed by director Gerard Barrett over an 18 day shoot, and Chloe Grace Moretz plays Susannah Cahalan. The film uses real-life footage from Susannah in her hospital bed and beautifully captures her strength, her blossoming romance with Stephen (her now husband), and the tenacity of the doctor who finally diagnoses her—Souhel Najjar. Chloe Grace Moretz not only looks remarkably like Susannah, but she also provides a convincing performance, really capturing Susannah’s despair and distress at her deteriorating health. There is a scene where Susannah looks into a mirror and a faded reflection appears—a metaphor illustrating how much Susannah feels her “sense of self” is disappearing—an oftquoted comment by many survivors of encephalitis. There is a strong supporting cast which includes Richard Armitage and Carrie-Anne Moss as Susannah’s parents. There are some elements of the film that might disappoint—an over emphasis on coughing at one point, which felt as if the director struggled with portraying an illness that is often not beset with clear physical indicators early on. Likewise, it seems at times as if the strapline of the book “my month of madness” took the film on an overly psychiatric (in particular bipolar) route. Of course it is not unheard of for these patients to enter psychiatric pathways, and so in this sense the film is reflective of the broader experience for many patients. However, our understanding www.thelancet.com/neurology Vol 16 February 2017
at The Encephalitis Society is that many people’s overwhelming experience is one of a lack of diagnosis as much as the potential for misdiagnosis. Additionally, it must be hoped, that as much as the film might provide a light-bulb moment for some, it is equally hoped it does not provide a false sense of optimism among those who have a confirmed psychological or psychiatric condition. Unfortunately, the film brushes over the medical interventions required in the diagnosis of this often elusive condition and also perhaps the amount of work the hero of the hour, Souhel Najjar, would have done to secure the diagnosis. The clock scene from the book, made infamous subsequently by featuring in the series Hannibal, that helped diagnose Susannah, is reinforced as the primary tool used to really get to grips with understanding this complex condition. There is a quietly unsung second hero in this film—The New York Post. Their tolerance of Susannah’s increasingly unusual behaviour, their support of her through her illness, and their facilitation of her return to work is not everyone’s experience with their employer following ill health and disability. Brain on Fire is the most important film to be made about encephalitis since Awakenings, which described the work of the late Oliver Sacks and the survivors of encephalitis lethargica in the 1960s. Whatever the response to this film, one thing is sure, that its release will validate the experiences of many patients, and support the work of those of us who are trying so hard to raise awareness of a condition that few will have heard of until it strikes their family. We need more Dr Najjar’s—as Susannah says at the end “In a system that is designed to miss people like me, Dr Najjar found me”.
Brain on Fire Directed by Gerard Barrett, 2016. 95 mins. Premiered at the Toronto Film Festival, Sept 16, 2016 For more on The Encephalitis Society see http://www. encephalitis.info For more on the work of Dalmau and colleagues see Ann Neurol 2007; 61: 25–36
Ava Easton, Phillippa Chapman, on behalf of The Encephalitis Society
Foundation Features
“She’s dying in there!” implores her father. “The tests are not saying she’s dying”, replies the doctor.
111