Susannah Cahalan

As Cahalan was a journalist for the New York Post before she became ill, her editor suggested that she write about her disease and how it impacted her. As she recovered from her brain illness, she decided to bring the same journalistic approach to writing her memoir, using fact and research as the foundation for her story. According to Cahalan, it was a "very dissociative process" to write about her experience with the disease. She had to recreate the timeline of everything that happened, gathering different records from the hospital to keep track of what happened and when. Through interviewing those closest to her, she was able to piece together what that month looked like.[4] Overwhelmingly, what she remembered from her disease was the fear and anger that it created within her. Writing her book, she said, felt like regaining control over the body that had controlled her for so long.[5]

Cahalan still writes for the New York Post with articles published frequently.[6] She gave a lecture at the opening session of the American Psychiatric Association's 2017 meeting.[7] She presents talks for hospitals and universities to raise awareness about her disease. She resides in Brooklyn, New York, sharing a home with her husband, twin boys, and dog.[8]

Susannah's disease manifested in 2009 when she was just 24 years old. It began with sensory issues, which she later described in her article "My Mysterious Lost Month of Madness" as experiencing the world “brighter, louder, more painful.”[4] She also began experiencing numbness in the whole left side of her body, and paranoid hallucinations of bed bug bites. Concerned by the numbness, Cahalan sought out a neurologist who ran multiple inconclusive tests, including two normal MRIs. Susannah began experiencing severe insomnia and continued behavioral abnormalities. One night at her boyfriend's apartment, she had a grand mal seizure and woke up in St. Luke's Hospital. Cahalan describes the hospital neurologist as dismissive, and she received her first of multiple misdiagnoses: alcohol withdrawal. Psychiatrists also misdiagnosed her with schizophrenia and bipolar I disorder. Cahalan was released from the hospital, and as her disease worsened, she had another grand mal seizure.[4]

After her second seizure, Cahalan's parents took her to the hospital for an EEG and demanded that she not be taken to a psychiatric floor. Unlike many anti-NMDA cases, Cahalan was never admitted to a psychiatric ward. While at the hospital, Susannah had her third seizure and was immediately placed on the epilepsy floor of New York University's Medical Center. Susannah's hallucinations and delusions soared during the month she spent in the hospital. Susannah had two lumbar puncture procedures that revealed high white blood cell counts. Because high white blood cells count signify brain swelling, the case was officially passed to neuro-pathologist and epileptologist, Dr. Souhel Najjar at NYU medical center.[4]

Dr. Najjar had Cahalan perform a “clock test", which involves the patient drawing the face of a clock. When Cahalan drew her clock, she was only able to recreate half of it, indicating injury to one side of her brain. After a brain biopsy, it was concluded that Cahalan's issue was not psychiatric, but the result of anti-NMDA encephalitis, a brain-inflammation disease with an unknown cause. She was only the 217th person diagnosed with this illness.[5]

In order to treat her disease, she was given an assortment of different steroids, infusions, and plasmapheresis. She made a full recovery without suffering long-term brain damage.[9]