I just burned through an incredibly captivating book called “Brain On Fire” by Susannah Cahalan, an autobiographical story of a young woman who – once vibrant, outgoing, effervescent and talkative – found herself spiralling into a world of paranoia, hallucinations, inability to string more than 5 words together, memory loss, psychosis, seizures and catatonia. The hardest part to read was about her own self-awareness that something was dangerously going wrong with her and she couldn’t control it. How horrifying it must be to watch yourself going mad.
While most psychiatrists would have quickly diagnosed her as mentally ill with schizophrenia or schizoaffective disorder (and in fact, one neurologist diagnosed her as an alcoholic who should just stop partying so hard), she was lucky enough to have a team of doctors at New York University (NYU) Hospital who were mystified enough to want to get to the heart of what was going on with her. She could have been drugged up and left to die a slow death in a psychiatric ward. Instead, she has pretty much fully recovered to her “normal” self, but left feeling incredibly vulnerable.
Through a combination of luck, medical perseverance, and parents and a boyfriend who refused to believe she was mentally ill, she was found to have anti-NMDA-receptor autoimmune encephalitis, and only the 217th person in the world to have been diagnosed with this in spring 2009. Essentially, antibodies were maliciously attacking a part of her brain and inflaming it, causing it to change the way she behaved – she had a sick brain. Despite the increased rate of diagnosis since Cahalan’s own experience, it is still a mysterious syndrome, where some patients may recover partially, some fully, and some may die… all for inexplicable reasons.
Cahalan has no recollection of her period of hospitalization when she was at her lowest point, and in fact, near death. She managed to piece together that time through interviews with family and friends, hospital records and videos and entries in journals that were kept by her father and mother. Understandably, she found it incredibly difficult to watch the videotapes of herself in hospital: it was like watching scenes from One Flew Over the Cuckoo’s Nest or The Exorcist. This person was not someone she recognized or knew, and yet, it was her… at least physically. How odd it must have been to feel so… separated from oneself.
What’s probably most disturbing about this story – and Cahalan writes about this as well – is how many people since the evolution of time, may have had this but were never diagnosed? How many people were left to die in a poorly managed mental health system because they were deemed “crazy”? Or in the case of children who exhibited symptoms, were classified into the generic “autistic” category and left mistreated? To me, this story amplified the notion that illnesses of a mental nature are neurochemical diseases and can be treated. Our brains are wildly sophisticated organs but one poorly wired neurotransmitter can completely change how we behave – that’s pretty miraculous. Cahalan is hopeful that neurologists, immunology specialists and psychiatrists are now working more closely together to look at the brain and human behaviour as a collective force.
Most inspiring was the undiminished faith her parents and boyfriend had in her. They refused to let her go. They could see that a part of her was “still there” and that’s why they prodded the doctors as much as they did. How easy would it have been to just give up, to be overcome by fright after watching one too many incidences of psychosis or one too many seizures? It’s proof again of how important it is to get second and third opinions, and why you are your own best advocate for your health (or in Cahalan’s case, because she could not be her own advocate, she had a devoted family who fought for her).
It was a remarkable story, and a stark reminder of how important it is to have people in your life who know you, who really know you, and won’t give up on you.