Susannah Cahalan knows how to tell a story. She started as a “copy kid” at the New York Post, sorting mail and making coffee, and when readers meet her on the page, she is a full-time writer there.
But what she did not realize was that that failed meeting was just one of a string of uncharacteristically chaotic and disjointed events which occurred as part of her “descent into madness”.
What was not only surprising, but completely shocking, is that only days later, she would wake in a hospital bed, with no memory of having gotten there, with her condition rapidly deteriorating into catatonia.
The story of her recovery is just as shocking. Her editor approved the pitch for the article “My Mysterious Lost Month of Madness,” for which she won the Silurian Award of Excellence , and this article would become Brain on Fire.
This bizarre and painful experience translates into a memoir with an inherently thriller-like pace and subject. And Susannah Cahalan, with her journalist’s training, shapes it into a compelling and sleek narrative.
A writer’s brain might be a primary source for other memoirs, but Brain on Fire must rely on interviews with doctors and nurses and friends and family, medical records, video footage, the hospital journal that her divorced parents used to communicate, her father’s personal journal, as well as her own notebooks and remembrances.
Some of what she remembers from before she was admitted to the hospital seems coherent and clear, the earliest stages of feeling unwell.
“When I got to my feet, a sharp pain lanced my mind, like a white-hot flash of a migraine, though I had never suffered from one before. As I stumbled to the bathroom, my legs and body just wouldn’t react, and I felt as if I were slogging through quicksand. I must be getting the flu, I thought.”
When she became increasingly unstable and openly troubled, her father suggested that she try to write out her thoughts, and excerpts from this computer diary add another dimension to the drama.
Her thoughts are incomplete, seemingly unrelated, hallucinatory: the reader has a tactile representation of what her brain was like in these earliest stages. “Now, years later, these Word documents haunt me more than any unreliable memory.”
In this short video interview, she discusses how strange it was to watch that old footage, that “other Susannah” in the hospital video footage, to try to reconcile the fact that it was her, but what part of her was that exactly.
From her father’s journal, she can assemble scenes like this:
“That picture contrasted sharply with the disarrayed young woman Dr. Friedman had just examined. Even so, he looked my dad directly in his eyes and said, ‘Please stay positive. It will take time, but she will improve.’ When Dr. Friedman embraced him, my dad broke down, a brief surrender.”
In a handful of instances, and with the help of hospital records detailing specific instances, she attempts to recreate what might have been going on in her feverish and struggling brain.
I can see him onstage, strumming on his guitar, but I can’t keep my eyes open to watch the scene. I feel a touch on my skin. It makes me shudder. I hear a voice.
“SuSHana, time to take vitals.”
The concert disappears, dissolving into the dark hospital room, the nurse next to me. I’m back, back in the place where there is no night and there is no day. It’s this woman’s fault I’m back here. I’m suddenly filled with blinding, focused rage. I wind my right arm back and punch her in the chest. She gasps.
The medical terminology is kept to a minimum, but diagrams and concise definitions are shared.
For instance, readers learn not only the definition of catatonia (stage defined by absence, inability, nonbehaviors) but the mnemonic that doctors use to diagnose it WIRED ‘N MIRED with each letter’s associated symptoms. (The video shows a still of her in that state.)
And eventually readers learn that Anti-NMDA-Receptor Autoimmune Encephalitis is what happens when a body’s immune system attacks the brain.
Actual excerpts from her father’s notebook from various stages of the “treatment” also appear, in one instance with instructions to her to reproduce it in her own notebook; the two excerpts appear on the same page and reveal the gap in functioning in yet another way.
Later, in the recovery stage, specific results from neurological tests are discussed, complete with doctors’ names and earlier results for comparison purposes. So readers learn, for instance, that she was given one minute to come up with as many ‘f ‘words as she could, then ‘a’, then ‘s’.
She named 32 in 3 minutes, at that particular stage in her recovery, improving on 5 words in one minute earlier in the process (the average is 45):
F Fable, fact, fiction, finger, fat, fantastic, fan, fastidious, fantasy, fart, farm
A apple, animal, after, able, an, appeal, antiquity, animosity, after, agile (Yes, one repeat)
S scratch, stomach, shingle, shit, shunt, sex, sing, song, swim, summer, situation, shut
And how does she get from 5 to 32?
“This amazing malleability is called neuroplasticity. Like daffodils in the early days of spring, my neurons were resprouting receptors as the winter of the illness ebbed.”
In the wake of this experience, Susannah Cahalan “became obsessed with understanding how our bodies are capable of such underhanded betrayal. I found, to my frustration, that there’s more we don’t know about the disease than we do know.”
The memoir and her story is, in this context, a mark of activism. Many have died from this disease without its having been identified; she was lucky to have the support of friends, family and care-givers and the advantage of a substantial health insurance package buoyed by family with means to cover tests/treatments beyond that, but many have not been that lucky.
She also seeks to draw attention to the work of practitioners like Dr. Najjar, who “is taking the link between autoimmune diseases and mental illnesses one step further: through his cutting-edge research, he posits that some forms of schizophrenia, bipolar disorder, obsessive-compulsive disorder, and depression are actually caused by inflammatory conditions in the brain”.
In other words, this neat-and-tidy line that we like to drawn between physical health and mental health is a whole lot fuzzier than we might like to think.
Brain on Fire lays that truth out on the page; Susannah Cahalan’s memoir is a reminder that the line between personal wellness and madness can shift suddenly, dramatically, sometimes tragically.
And, it’s a really great story.