Book Review

How a case of suspected bedbugs became a medical drama with worrying implications

Reviewed by Aida Edemariam

Published: January 27, 2013

One morning, Susannah Cahalan woke from dreams of bedbugs to find two red dots on the main vein in one arm. She called an exterminator to comb through her Manhattan apartment; he found nothing at all. But bedbugs had been in the news, and danced insistently through her mind, and she could not believe him. She demanded he fumigate the place anyway. She was so preoccupied with the bedbugs that she forgot, for the first time in her career as a reporter for the New York Post, to prepare for an ideas meeting, a humiliating experience. Back at her desk, a colleague reassured her. "'Thanks, Ang,' I said, sipping my lukewarm coffee. 'Things just aren't going my way.'" It's a line straight out of the newsroom scenes in the TV version of Superman – Cahalan, a girl from the New Jersey suburbs who has a wide-eyed love of what she does (and the prose to go with it), presents a blithe, upbeat, tabloid world, where scams are uncovered, celebrities stalked, and bad guys get their just deserts. It's instructive, for instance, that she says her first big scoop for the paper, an interview with a prisoner obtained while she was still at college, caused a national debate about tabloid ethics and methods, but she does not explain exactly what her methods were, or even briefly reflect on whether those who worried about them had a point. The experience simply whetted her appetite for more. Partly (though not entirely) this is the imperviousness of gilded youth. Brain on Fire is an account – comprehensively, impressively reported – of how this imperviousness was punctured in the most dramatic possible way.

A few days after the bedbug incident, Cahalan found herself alone in her boyfriend's flat, searching obsessively – and uncharacteristically – through his emails and letters for proof of betrayal. A sharp, migraine-like pain cracked through her brain, accompanied by nausea. She felt a tingling in her left hand, which then went numb. A neurologist, and an MRI, found nothing amiss; her gynaecologist suggested possible glandular fever, which was also soon discounted. But the symptoms continued to build: panic attacks in public places, more uncharacteristic and dramatic failures at work. She began to ricochet between wild weeping and absurd happiness; she paced floors, unable to settle; insomnia became the norm. And then, one night, she suffered a full-blown seizure and blacked out. The neurologist diagnosed stress and too much partying; a psychiatrist diagnosed possible bipolar disorder.

Another seizure, another visit to the neurologist, an EEG, and a dismissive technician. "I've seen this dozens of times, mostly with bankers and Wall Street guys who come in here all stressed out. There's nothing wrong with them. It's all in their heads." Cahalan, increasingly delusional, thought the technician was a hired actor administering an elaborate punishment for her erratic behaviour.

This was the beginning of a terrible month, almost all of which she cannot remember, because her illness obliterated her short-term recall, but which she has painstakingly reconstructed from the accounts of her family, her doctors, some erratic diaries and some hospital video.

Delusions – that people were speaking to her out of the TV, or that her father had murdered his girlfriend – were joined by paranoid hallucinations, cruel aggression and desperate attempts to escape. The list of possible diagnoses lengthened: epilepsy, multiple personality disorder, schizo-affective disorder, bipolar disorder. Her blood pressure was dangerously high and she was increasingly unable to walk properly, complete simple cognitive tasks, or even speak, but test after test for physical ailments came back negative. The only thing anyone knew for sure was that her white cell count was up, and that she was worsening by the day.

Unable to control her mouth or tongue, she began to drool and grimace and to make constant involuntary chewing motions. Eventually she began to enter a catatonic state. She is both forensic and sensitive throughout about the effect of all this on those closest to her; their panic and helplessness, and in particular their increasing fear that she would be transferred from the epilepsy unit to the psychiatric ward.

This was the point (with a Hollywood inevitability one would expect in a book such as this) at which her saviour appeared, in the form of a moustache-pulling Syrian neurologist, Dr Souhel Najjar. Her mother even called him a real-life Dr House. He asked her to draw a clock. After a few attempts, she did so – with all the numbers squashed into the right-hand side: low-tech, indisputable proof that the right hemisphere of her brain was seriously inflamed. "Her brain is on fire," he told her parents. "Her brain is under attack by her own body." Focused treatment began immediately.

Cahalan is never in any doubt about the extent of her luck: the luck in finding a sensitive doctor who listened to her, and took her case on its own merits; the luck of being admitted to a cutting-edge centre in a cutting-edge city (there was nothing low-tech about her treatment, which involved, among many other things, infusions containing antibodies from 1,000 people, at $20,000 per infusion; she eventually cost her insurer $1m); the luck of timing – the disease had been discovered only three years previously; the luck, above all, not to have been diagnosed with a psychiatric disease and treated accordingly. Researchers, she writes, believe that NDMA autoimmune encephalitis has been around as long as humanity. That it has often been misdiagnosed as schizophrenia, or autism, or – given that in children particularly it can produce mutism, hyper-sexuality, violence, convulsions, crab-walking, hissing, grunting – as pure evil, leading to attempts at exorcism. What percentage of patients condemned to mental institutions or lifelong heavy medication, asks Najjar, might actually be suffering inflammation of the brain?

But there are other, equally troubling questions that she only touches on. During one hospital stay, she finds herself next to a woman who is diagnosed with colon cancer and responds with thankful prayer. "I understand her relief, how important it is for your illness to have a name." But an even greater relief, in Cahalan's case, is that her suffering turned out to have a clearly physiological cause. Physical illness is neutral, easily comprehensible, and is not seen as connected with the thinking, feeling self in the way that mental illness is. There is a frightening hierarchy implied in part of a note that Cahalan's father taped to a wall on the epilepsy ward: "Susannah is a wonderful young woman who deserved your hard work." The overwhelming feeling, while Cahalan was ill, was one of shame. She hid her condition from colleagues until she could explain it, and even then she felt she had to prove her return to "normality".

A physiological explanation is the pot of gold everyone is searching for, from health providers to drug companies; finding it makes everything easier, and frequently more lucrative. Why embark on the uncertain business of talking therapy, for example, when you can prescribe some pills? Stories like Cahalan's provide a wild hope – Najjar was engulfed with requests for help after she wrote about her case – and it is true that there is a growing group of autoimmune diseases being discovered that directly affect the brain, and must be chased as aggressively as possible.

It was not an easy road, and relapse is possible at any time, but Cahalan eventually recovered. Her boyfriend stood by her, her relationships with her parents (after a distinctly rocky period in her mother's case) deepened and matured, and her colleagues took her back with open arms. All this, too, was extraordinary, unusual luck. Except that now she knows it for what it is.
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I just couldn't stop reading - I was so intrigued by what was happening and how it would play out that the book just pulled me along - "one more chapter, then I'll go to bed." Couldn't help comparing it to House - what happened to the author would... more

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